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PurposeThe purpose of this paper is to further understand the needs of carers when a relative with dementia is admitted to an organic impatient ward.Design/methodology/approachA constructivist grounded theory approach was employed to generate a substantive theory to understand the needs of carers and how staff perceive carer needs when a relative is admitted to a dementia ward. Five relatives and six members of staff were interviewed using purposive and theoretical sampling. Interview transcripts were analysed using initial, focused and theoretical coding using constant comparative methods to develop the end theory.FindingsThe grounded theory concluded that carers have three categories of needs: “The Safe and Cared for Relative”, “The Informed Carer and “The Understanding, Responsive and Available Service”. Underpinning the needs are the relationships between carers, their relative and staff. Three barriers were identified which can impact on these needs being effectively met. These identified barriers were: Loss, Time and Ineffective Communication.Originality/valueThe grounded theory demonstrates that carers needs fundamentally relate to their relatives being safe and cared for and being included and informed during the admission. Relationships can be ruptured when a barrier prevents the needs from being effectively met. Recommendations are made to aim to reduce the impact of the barriers and to aid staff in developing their understanding of the carer experience.

© 2017 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group. Dedifferentiation describes a shift away from regarding cognitive impairments as the origin of difficulties experienced by people with intellectual disabilities and, instead, regarding their difficulties as socially produced and common to all people with disabilities. This article reviews research evidence concerning the advantages and disadvantages of dedifferentiated policy and service systems for people with intellectual disabilities, the bulk of which addresses education and health service systems. Advantages of dedifferentiation include its avoidance of assumptions about homogeneity, and the stigma of being labelled intellectually disabled; and its support for strong collectives and advocacy that enable people with all types of disabilities to live in the presence of others. For young children, dedifferentiated school and mental health services have positive outcomes not found in similar services for older children and adults. Disadvantages of dedifferentiation include inaccurate or absent representations of unique needs arising from intellectual disability, failure to reduce marginalisation, poor-quality non-specialist mainstream secondary education and health services, and deteriorations in social care. Arguments that dichotomies such as dedifferentiation/differentiation encourage simplification and misconception are reviewed: instead, twenty-first-century thinking negotiates between diverse parties and perspectives. The article makes the case for treating people with intellectual disabilities as members of the broad disability group wherever possible, and for protecting and developing differentiated opportunities, services and research whenever necessary. This requires policymakers and practitioners to balance conflicting ideas more effectively, but it also requires reflection and debate that allow new conceptual tools to emerge. The article concludes by posing three questions intended to encourage reconceptualisation.

Article as accepted for publication in Philosophy, Psychiatry, and Psychology published by John Hopkins University Press

Successful critiques of health policies for people with impaired cognition identify a need for alternatives that go beyond individualism. ‘Choice’ policy was examined as young people with severe intellectual disabilities moved from special schools to adult services. We draw on three cases from a longitudinal cohort study to examine the way decisions with and for these young people were made and accounted for. It was not a simple matter of parents and transition workers hearing about these young people’s choices and facilitating what they wanted. The data raise questions about discourses of choice in ID when referring to people with severe intellectual disabilities: few ‘choices’ could be considered informed nor made by young people with capacity to make them and many decisions were informed by other ethics. Findings were interpreted through a Deleuzean ethical–relational lens. We identify implications for theory and practice to show how Deleuzean thinking can reinvigorate intellectual disability.

This article examines “imagined constructed thought”: speakers giving voice to the inner world of a non-present other. Drawing on 9 hours of video footage of health-care staff discussing patients with intellectual disabilities (ID) during Discovery Awareness sessions, we explored times when the staff presented a possible version of a patient’s thoughts. They used those versions to take a stance on the patient’s inner world, often as a bridge between description of objectively observable phenomena and subjective interpretation of its meaning. It also projected staff’s own stance on what the patient was thinking, both in first position descriptions and as a competitive resource in those given in second position. The findings suggest that presenting the patients’ thoughts from a first-person perspective can be a versatile way of enacting a variety of complex epistemic and empathic actions in this setting. Data are in British English.

Background. Psychomotor therapy enables people to reflect on the relationship between experiences and feelings by starting from awareness of bodily responses rather than from awareness of emotion. In this study we examine PsyMot (ID), an assessment that directs this psychological therapy. Method. Twelve suitable consecutive admissions were recruited from a specialist intellectual disability (ID) assessment and treatment unit for adults. Video-recordings of PsyMot (ID) allowed assessment of interrater reliability (IRR). Treatment goals indicated by PsyMot (ID) were addressed using psychomotor therapy as part of a comprehensive program of interventions. Results. Psychomotor therapy was both feasible and popular with patients who participated without any adverse effects. Nine patients completed PsyMot (ID). IRR of the treatment goals identified by all 3 raters was good to excellent in 81% cases, but there were discrepancies for individual items. Conclusions. PsyMot (ID) and psychomotor therapy is feasible within this context, and enriched the clinical team's formulation. Further studies of reliability and efficacy should be undertaken.

Current revision of the two major psychiatric classification systems has elicited particular comment on neurodevelopmental disorders, which have seen increased provision of specialist clinical services, user group activity, fictional and biographical accounts, and research. Philosophical scrutiny of autism research and literature provides an additional perspective.Neurodevelopmental disorders show considerable overlap neuropsychologically, physiologically and genetically. They overlap diagnostically with schizophrenia, personality disorders, anxiety and depression. Of the two main diagnostic groups, there is more evidence of change with maturation in autism spectrum disorder than attention-deficit hyperactivity disorder. Interventions should combine cognitive, affective and embodied aspects of these disorders, and encompass the individual and their social environment. There is considerable evidence of the toll that caring for people with neurodevelopmental disorders exerts on parents.Neurodevelopmental disorders are multifaceted: research addressed to connection rather than further Balkanization is more likely to be fruitful. Clinicians should consider which facets are displayed symptomatically to enable people to grow through rather than surrender to their impairments. Social scaffolding optimizes functional well being. Future research should take into account the tensions in the relationship between research and user groups, and examine the experiences of adults and of the spouses and partners of those affected.

An ecological approach to understanding insecure attachments and social isolation among people with an intellectual disability is constructed using Gibson's (1979/1986) affordance-based theory. Although environmental affordances and individual limitations interact to limit the development of social competence, we believe that by focusing on the immediate environment, community-based approaches to helping people with an intellectual disability are often ignored, which increases the burden on individual caregivers. A more comprehensive strategy, which extends Gibson's theory of affordances, allows us to consider how higher level social systems influence the immediate environment and provides the context for understanding why successful change occurs when a multifaceted, holistic approach that works on several levels is adopted. Examining these systems within an ecological framework fundamentally redefines our thinking by shifting the focus from a person's disability to a more nuanced understanding of a pers...

Accessible summary • We asked eight members of staff who were working with people who had a learning disability, and also, complex mental health needs to tell us how they felt about their work. • These workers told us that not having enough staff and having a wide range of patients with different needs to look after made their job difficult. We felt they tried to put a ‘brave face’ on but we felt they worried greatly about working with patients who had complex mental health needs. • We did not feel these workers were given enough opportunity to think and talk about their feelings about their work. Staff tried to cope with these difficult thoughts and feelings about their work by trying to forget them or by thinking about other things. • Staff need to be given time to think and talk about their work and their feelings towards their patients. This may help them to feel less stressed and more able to cope with their patients and their work. Summary Experiences of eight staff working with people who have a learning disability and complex mental health needs were explored by interviews and analysed using the free association narrative interview approach (Hollway & Jefferson 2000). Participants reported that organisational factors such as not having enough permanent staff and having to manage a complex patient mix impacted upon their work. Participants’ unconscious communications were interpreted as evidence that they were experiencing projected anxiety from their patients. Participants did not appear to be given opportunities in work to reflect upon their emotions and often coped by repressing painful experiences or displacing these onto the organisation. Staff would benefit from exploring their conscious and unconscious reactions to their patients.

In contrast to other forms of family caregiving, becoming the parent or carer of a child with an intellectual disability (ID) implies an ongoing responsibility beyond the attainment of chronological adulthood ( Meyers et al., 1985 ; Todd and Shearn, 1996 ). At the same time, a discourse of self-determination pervades policy around transition to adult services in ID in England ( Valuing People, 2001) . In this paper we present a subset of data from a project which aimed to examine how the process of transition from child to adult services in ID is managed. Using data from 8 tape-recorded meetings in which transitions were planned and discussed, we examine what happens when the views of the parent/carer and the young adult are in apparent conflict. Drawing on the growing body of interactional work in the field (eg Rapley, 2004 ; Finlay, Antaki and Walton, 2008 ), we use conversation analysis to examine how professionals manage and negotiate this conflict and how some points of view or courses of action ultimately prevail over others. While the discourse of self-determination may prevail in English policy terms, we show how the fact that parents or carers ultimately have a key role in enabling the choices of the young person has a significant impact on these interactions.

Background This study examines how those planning futures for young people with moderate-profound intellectual disabilities invoke, deploy and interpret contrasting definitions of adulthood and perceived capacity for autonomy and self-determination. Methods Twenty-eight young people were followed through transition from children’s to adult services. This paper incorporates data from interviews with young people, their carers and transition staff. Results Two discourses around adulthood were identified. One positioned the young people as adults entitled unequivocally to self-determination, invoking policy injunctions to do so. The second qualified the young people’s adult status and claims to self-determination, emphasising the obdurate reality of intellectual disability. Conclusions Transition to adult services for young people with intellectual disabilities raises difficult questions about the relationship between vulnerable young people, families, professionals and society. Reducing these to rigid moral polarities of ‘right’ and ‘wrong’ creates an unhelpful context for good decision making. A more constructive approach would include all stakeholders in discerning ‘the right thing to do’.

For young people with intellectual disabilities (ID), the transition from children's to adult services has long been recognised as a challenging move. One of the aims of the White Paper Valuing People (2001) was to address some of the problems associated with this transition. This paper reports on data from a project which examines the impact of these service changes, and the ways in which transition is negotiated by carers, professionals and users. It presents a conversation analysis of eight tape-recorded formal review meetings at which transition to adult services is discussed. It takes as its starting point the existing interactional work on ID and the way in which this demonstrates the effects of the local and contextual specifics of particular kinds of interaction on the eventual outcomes (e.g. Rapley 2004, Antaki 2001, Maynard and Marlaire 1992). We show that an attempt to allow self-determination in the context of transitions can paradoxically result in undermining user choice and control. We also argue that, while a rule-based approach to practice may offer moral clarity for professionals, it can result in interactional and practical difficulties which cannot be easily reconciled.

This paper explores the experiences of people with borderline and low intelligence when compared to the general population. The aim was to explore whether people with low intelligence, who are rarely considered apart from the general population, might have particular needs in relation to health or social care. The method was secondary analysis of the ONS survey of psychiatric morbidity, 2000. Variables associated with low intelligence were identified and entered into a logistic regression. We found that a person with low intelligence was significantly more likely to be a smoker, have problems with paperwork and be renting their home, and a significant subgroup was more likely to be friendless. The pursuit of social justice and social inclusion may require greater attention to be paid to the health and well‐being of people with below‐average intelligence.

Background Theoretical literature in the intellectual disability (ID) field identified a mismatch between professional codes of practice (which assume clients to be ‘autonomous’) and the reality of fostering autonomy for people with ID (who at times are completely dependent on others). This research aimed to understand how professionals bridged this disjunction and actually provided ethical services with this client group. Method Nine professionals from adult ID services who had consulted with local Ethical Advisory Groups were interviewed about their experience of addressing an ethical issue within their work. Accounts were subjected to narrative analysis. Results Professionals' narratives featured the following themes: differing sources of conflict, professional vulnerability and seeking validation around resolution, centrality of relationships, fragility of resolutions and maintaining moral integrity. Conclusions Findings revealed systemic pressure on professionals to find ‘definitive’ solutions to ethical dilemmas when the issues were not open to such resolution. Findings were reviewed in light of ethical literature that shows how professionals' work inevitably features close and enduring relationships with people with ID. We suggest professionals need to draw on ethical frameworks that can accommodate relational aspects of their practice.

BackgroundPrevious research investigating post-traumatic stress disorder assumed that adults with intellectual disabilities would react to trauma in the same way as those in the non-disabled population. This study explored the personal experience of trauma in a small group of adults with intellectua

Background Research using the concept of Post-Traumatic Stress Disorder (PTSD) with adults with intellectual disability (ID)assumes they perceive and react to traumatic events in a similar way to non-disabled adults. Reactions to trauma displayed by children may be relevant to adults with ID as well. Methods Two focus groups were held with professionals and practitioners to explore the relevance of criteria from child as well as adult literature to adults with ID who experience trauma. Descriptive thematic analysis was carried out. Results Abuse, parental bereavement, and having children removed were considered common sources of trauma. Similarities identified between disabled and non-disabled adults were flashbacks and nightmares; distressed by reminders; avoidance; hypervigilance and increased arousal. Differences were the frequent occurrence of multiple rather than single events, which were considered significant in generating chronic problems similar to those described as PTSD; also the occurrence of physical health problems and behavioural re-enactments. Discussion and conclusions Experienced professionals and practitioners considered most of the ideas from PTSD research with non-disabled adults to be relevant to adults with ID who experience trauma, but that some behaviour reported in research with children was also relevant. Topics and questions for use in clinical and research practice with individuals who have experienced trauma were proposed.

Summary A small group of experienced community workers providing risk management for men with learning disabilities who sexually offend was studied. Attribution statements participants made about their risk appraisals were analysed using the Leeds Attributional Coding System (LACS). Results highlight the effort participants made to obtain sufficient information. They focused on factors external to the service-user for most effective risk management, but their confidence was undermined by other staff minimizing the importance of such risks. Services that fail to develop specialist risk assessment skills and to address the modest ‘economics of effort’ required for effective practice may compromise risk management by community staff.

Background The present authors investigated a database about people with severe intellectual disability (ID) to explore whether secure/insecure attachment plays a role in challenging behaviour. Methods The study took the form of a survey of staff and carers involved with a cohort of 54 school-leavers with severe ID. Results Thirty-four per cent of students were rated by placement staff as ‘over-investing in one or a few relationships which become a source of jealousy’. Students without such problems were significantly less likely to show challenging behaviours, while those with them were significantly more likely to be living outside the family home. Conclusions These preliminary results justify more detailed and longitudinal research into the relationship between attachment status and challenging behaviour.

Although bullying has been shown to reduce quality of life in many spheres, anti-bullying strategies have yet to be incorporated into services for adults with severe intellectual disability (ID). The present study employed a survey of staff and parent concerns about 54 previously surveyed students who had left a school for pupils with severe ID. A content analysis of follow-up interviews was performed in 10 cases. Staff identified 19% of the survey sample as bullying others and 11% as being picked on. Neither gender nor communication ability had an impact. There was no significant change in bully or victim status over time, although some people did change. Parents or staff raised bully/victim problems in more than half of the interviews. There is sufficient evidence of bullying behaviour to warrant the adoption of anti-bullying strategies.

A shift in accepted practice regarding sharing research led one editor to discuss adopting a legal rather than a moral stance to enforce ethical standards. Familiar ethical concerns regarding consent and balancing individual rights against those of others are considered, alongside lacunae in the field, by drawing on virtue ethics. Reappraisals of quality of life, person-centered planning and normalization are discussed, concluding that developing ethical relationships with people who have intellectual disability takes precedence over client competency.

Staff from four units for adults with profound learning disabilities described their relationship with a particular client during individual discussions. Issues arising from discussion were elaborated in subsequent individual and group meetings, evolving into an account of interactional aspects of professional care based on a core typology of relationships (Provider, Meaning-maker, Mutual and Companion). The process of this grounded theory analysis is exemplified. The analysis concludes with four propositions about staff-client relationships, and discussion of their implications for clinical services.

Vulnerability and protection are key concepts within the literature relating to systemic therapy for people with an intellectual disability (ID). This paper explores the processes by which these concepts were discussed in systemic therapy sessions.Four videotapes of systemic therapy sessions were evaluated using a qualitative design, incorporating thematic and conversation analysis. The videotapes were drawn from systemic therapy sessions with 3 families with an adult with ID.Vulnerability and protection themes were identified within the content of therapeutic conversations, including protection from the disability and its consequences; protection from peers, siblings, and the world at large; and protection from emotionally sensitive topics. Protective strategies were also used by all system members through the process of therapy. Key strategies were topic switch and reversals.Protection is a key issue. Clinical practice could be enhanced if therapists reflect on the strategies they employ in addressing protection effectively.

Two main studies of interaction between adults with intellectual disability and staff are reported. The first varied five interactive strategies with nine clients. Results showed that increased positive behaviour from clients was associated with staff talking with them and using social routines. No such increase was observed when staff made their responses contingent on clients, a finding which was supported by the second study carried out with 16 staff-client pairs. In this second study no correlations were found between behaviour during interaction and developmental age.

The interactions between adults with profound intellectual disability and staff are described, during sessions when the client's staff member talks with them. Information about 20 staff-client pairs from three different settings is reported. Results showed that, in relatively ideal conditions, clients responded positively during approximately one third of session time; that staff were very responsive to changes in client behaviour; and that clients were most likely to respond negatively to changes in staff behaviour, if they responded at all. No evidence of turn-taking between the interactors was found.

Institutional and psychological aspects of transition were explored with parents and staff involved with five young adults with severe intellectual disability whose challenging behaviour diminished after they made the transition, and five whose challenging behaviour remained high. They were selected from a previously surveyed cohort. Grounded theory analysis of interviews suggested little connection between the perspectives of parents and staff. The impact these differences have on communication about challenging behaviour was explored, and recommendations for service changes are made.

Attachment theory makes sense of two phenomena observed in some people with learning disabilities: it provides a reason for their limited exploration of the world, and it explains discontinuities in the pattern and intensity of their expressions of anger. Applying this framework to three enmeshed relationships occurring between an adult with learning disabilities and a member of care staff achieved at least partial resolution of their problems. Attachment theory's critics have set a number of challenges for its proponents, including emphasizing an interactional rather than a unidirectional approach to relationships; prioritizing social context; and understanding the attachment dynamic dimensionally rather than as a set of categories. The latter issue is pertinent for residential services: facilitating secure attachment relationships for distressed clients may be difficult for professionals, but partial assuagement of their attachment needs is a realistic clinical goal.

The effect on service provision of describing a variety of actions as challenging behaviour is discussed: it is suggested that studying stereotyped, aggressive and self-injurious acts in their own right has yielded more useful psychological debate, and ignoring such conceptual thinking leads to implicit theorizing where assumptions go unquestioned. Evidence for the relevance of staff actions on different topographies of client responses is critically reviewed, alongside discussion of the authors' rhetoric. The importance of adjusting language and frameworks to make room for alternative conceptualizations is discussed. The article concludes by recommending that research into staff attitudes and actions will be better served by reflexive methods and reporting which emphasize mutuality.

Moving from an individual to a social focus will allow clinical psychologists working with people who have learning disabilities to address a wider range of difficulties experienced by this client group. Social constructionist theory may be a useful framework to facilitate such an approach, and is intellectually compatible with changes occurring in other related disciplines. Research relevant to this perspective is reviewed under four subheadings proposed by Doise. Implications for clinical practice are discussed by reference to two case studies.