The everyday functioning of individuals with cognitive difficulties and their families : going beyond neuropsychological assessment

The portfolio has three parts:Part One is a systematic literature review, in which the theoretical, conceptual and empirical literature relating to the active involvement of family members in interventions for adults with memory impairment is reviewed.Part Two is an empirical paper, which explores how objective cognitive performance translates into self-reported cognitive skills and diabetes self-management in individual with Type 1 Diabetes.Part Three comprises the appendices

Prison(er) auto/biography, 'true crime', and teaching, learning, and research in criminology

The main aim of this essay is to explore prisoner life writing within the specific, richly and multiply dependent context of teaching and learning undergraduate criminology at an English university, from the authorial viewpoint of a teacher and her students as budding criminologists and co-authors. This article seeks to redress a continuing resistance to life history approaches in the teaching of criminology, despite the discipline being formally devoted to the understanding of the meaning and experience of imprisonment in all its forms and consequences. What follows is a trucated narrative of what students had to say on the fascinating subjects of prisoner auto/biography and its place in popular and expert discourses on crime, criminality, and punishment, contextualised within the academic discipline of criminology

Emotion-focused care for patients with dementia: defining distress and responsive care from hospital staff

Hospital care for patients with dementia needs to improve because of concern for patient wellbeing and hospital resources. When patients are distressed, care is particularly challenging. This thesis sets out definitions of emotional distress and emotion-focused care for hospital patients with dementia. Drawing directly upon the contributions of patients and ward staff, the thesis proposes solutions for improving care for patients in real-life hospital settings. This thesis presents four studies. Study 1 aimed to find out how emotional distress experienced by people with dementia has been described. The study is a mixed-method systematic literature review. Personal accounts of what emotional distress is and what causes it were sought and analysed using corpus-based and ethnographic methods. This provided a comprehensive and original description of emotional distress for people with dementia from the largest number of viewpoints to date. The findings established that complex and varied emotions are well described for people with dementia, which gives an alternative viewpoint to the care of people with dementia to the use of diagnostic labels to understand and respond to mood. Recommendations were made for this understanding to inform the design of holistic healthcare. Study 2 is presented in two parts. The aims were to describe how the emotional distress of hospital patients with dementia is noticed, understood and responded to by hospital staff, in order to develop an understanding of emotion-focused care that could be achieved within routine hospital practice. Interviews were conducted with a full UK hospital ward team providing dementia care (n=47), using freelisting methodology, which gives quantitative and qualitative findings. The study produced a description of distress as it existed within hospital practice and produced a menu of ways that staff across the hospital could act to deliver emotion-focused care. The results showed that hospital staff had a shared understanding and shared approach to emotional distress that had not been described in literature before. Hospital staff emphasised existing resources, including existing personal and professional caregiving experiences of staff members; this is important because the findings could have immediate impact on current practice. Study 3 aimed to explore the specific barriers and facilitators to hospital staff caring for the emotional wellbeing of patients with dementia, in order to make recommendations for practice that were sensitive to hospital priorities and existing resources. Semi-structured interviews were conducted with hospital nursing staff (n=12) from a hospital site different from that in Study 2, which provided long-term care placements for patients with complex care needs. Thematic analysis was used to describe the conditions under which delivering emotion-focused care was more or less possible. Findings recommended gathering concise, personal patient information, sharing multidisciplinary and personal skills and investing in an ethos of being with the patient in their experience; changes that could be effectively implemented without incurring additional costs. Studies 2 and 3 suggested that under-recognised resources already exist within routine hospital care to improve the emotional wellbeing of patients with dementia. Study 4 aimed to present the requests for care made personally by hospital patients with dementia when they are emotionally distressed, to give the perspective of patients with dementia that is mostly missing from care planning in hospitals. The study is an analysis of written advance care planning documents that were retrieved from real world hospital practice. Descriptive phenomenology was used to describe the essential components of the care requests. The results showed that requests were personalised and varied with the type and extent of distress felt, and could not be easily simplified into a description of care that would meet the needs of all patients; however, personalised care was requested succinctly by patients with dementia using advance care planning documents, suggesting their value in making this knowledge available within routine hospital practice. The thesis contributes to practice by recommending solutions for improving the care of patients with dementia that suit real world hospital practice, as described by the key stakeholders of frontline hospital staff and patients with dementia personally. Collectively, the findings of this thesis showed that the emotions of people with dementia were individually variable, extreme and understandable, changing in meaningful ways as a reaction to circumstances. Knowing the patient, being with the patient and sharing existing expertise amongst peers were priorities for hospital staff; use of under-recognised resources within routine hospital care were described as achievable mechanisms for promoting emotion-focused care. This thesis contributes to the research literature by presenting original, empirically supported perspectives that promote the emotional wellbeing of people with dementia

Importance of personal and professional experience for hospital staff in person-centred dementia care: a cross-sectional interview study using freelisting in a UK hospital ward

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. Objective To detail how hospital staff with differing personal and professional caregiving experiences approach the care of patients with dementia, in order to make practical recommendations for practice. Design Cross-sectional qualitative interviews. Setting A UK hospital ward providing dementia care. Participants A complete hospital ward staff team, constituting 47 hospital staff from 10 professions. Methods Hospital staff were asked to list their approaches to emotion-focused care in individual, ethnographic freelisting interviews. Cultural consensus analysis was used to detail variations in approaches to dementia care between staff subgroups. Main outcome measures The most salient listed descriptions of care emphasised by staff members with personal experience of dementia caregiving when compared with staff members without such experience, and descriptions from staff newer to the profession compared with staff with more years of professional dementia caregiving experience. Results Subgroups of hospital staff showed different patterns of responses both in how they noticed the emotional distress of patients with dementia, and in prioritised responses that they deemed to work. Hospital staff with professional experience of dementia caregiving and staff with fewer years of professional experience prioritised mutual communication and getting to know each patient. Conclusions Subgroups of hospital staff with personal caregiving experiences and fewer years of professional care experience were more likely to describe person-centred care as their routine ways of working with patients with dementia. It is recommended that personal experience and the novice curiosity of hospital staff be considered as valuable resources that exist within multidisciplinary staff teams that could enhance staff training to improve the hospital care for patients with dementia

Moving forwards not backwards: heterogeneity in autism spectrum disorders

The article by Mottron and Bzdok1 argues that heterogeneity in autism is artefactual, and that returning to a “prototypical” autism would benefit clinical practice and research endeavours. We note that the authors do not define what they mean by “prototypical” autism and thus it is left for the reader to interpret who would and would not be included under the authors’ revised definition. However, from our reading, we argue that, though perhaps unintended, the suggestion is for a return to a rather stereotyped understanding of autism, one which is no longer fit for purpose and that research does not support: we offer our insights from both clinical and academic practice

The meaning of autistic movements

Movement of the body is an essential way to characterise autism, according to diagnostic criteria. However, qualifying descriptions of what autistic movements are, their functions, and personal value, are missing from academic literature and clinical guidance. We systematically searched for autistic adults’ descriptions of their body and its movement within autobiographical narratives in blog data. Descriptions from 23 autistic authors formed a qualitative dataset. The search strategy identified descriptions of movements and meanings without a priori definitions, such as being stereotyped or ritualistic, which were submitted to a thematic analysis. Authors described stigmatisation of some of their movements, causing censorship. However, movement provided personal benefits, including enhanced thinking and focus, routine, sensory regulation, release of energy, increased body connection and awareness, regulated emotion and time without self-restraint. Examples included stimming or self-stimulating behaviour, dancing and physical exercise. Movement was accompanied by qualifying descriptions of being natural and harmless. Moving freely, expressively, and sometimes repetitively, strengthened self-identity. In conclusion, body movements have both stigmatised and non-stigmatised appearances for autistic adults, but these cannot be distinguished by the function of the movement. Expressive, regulating and repetitive movements can be a wellbeing resource for autistic people. Implications for practice are discussed

Meeting the emotional needs of hospital patients with dementia: a freelisting study with ward staff

Background and Objectives: People with dementia are vulnerable when in hospital, with serious risks to their physical and emotional wellbeing. Hospital staff are expected to understand and respond to the emotions of the patient; however, it is not known how this can be achieved. We provide a concise description of achievable emotion-focused care for patients with dementia. Design and Methods: Exploratory qualitative interviews were conducted with a whole UK hospital ward providing dementia care, constituting 47 staff members. Staff responded to four questions using ethnographic freelisting. They listed: (1) all the ways they notice the emotional distress of patients with dementia, (2) the causes of emotional distress, (3) all the ways they respond and (4) the responses that seem to work. Cultural consensus analysis was applied. Results: A single-factor solution for each question indicated a consensus approach to emotional distress. Emotional distress was noticed from agitation (Smith’s saliency score, 0.418), crying (0.350) and increased mobilising (0.238). The main causes of distress were the unfamiliar hospital environment (0.355) and not knowing what is happening (0.313). The most effective ways to respond to emotional distress required knowing the person (0.299), talking (0.283) and being with the person (0.269). Discussion and Implications: The findings expand what is understood of behavioural and psychological symptoms of dementia; these communicated emotional distress with well-understood causes. Prioritised ways of responding to emotional distress described person-centred care. The results offer a menu of options for providing emotionally-responsive care for patients with dementia in hospital. Future research should evaluate the care described

Improving emotional well-being for hospital-based patients with dementia

Purpose: Improving hospital care for people with dementia is a well-established priority. There is limited research evidence to guide nursing staff in delivering person-centred care, particularly under conditions where patients are emotionally distressed. Misunderstood distress has negative implications for patient wellbeing and hospital resources. The purpose of this study is to use the expertise of nurses to recommend ways to care for the emotional wellbeing of patients with dementia that are achievable within the current hospital setting. Approach: A qualitative study was conducted in two long-stay wards providing dementia care in a UK hospital. Nursing staff (n=12) were asked about facilitators and barriers to providing emotion-focused care. Data were analysed using thematic analysis. Findings: Nursing staff said that resources existed within the ward team, including ways to gather and present personal information about patients, share multidisciplinary and personal approaches, work around routine hospital tasks and agree an ethos of being connected with patients in their experience. Staff said these did not incur financial cost and did not depend upon staffing numbers but did take an emotional toll. Examples are given within each of these broader themes. Implications: The outcome is a short-list of recommended staff actions that hospital staff say could improve the emotional wellbeing of people with dementia when in hospital. These support and develop previous research.Originality: In this paper, frontline nurses describe ways to improve person-centred hospital care for people with dementia

Adapting services for autism: Recommendations from a specialist multidisciplinary perspective using freelisting

The guidance available for tailoring mental health services for autistic people is limited and dispersed. Practitioners attempting to appropriately adapt mental healthcare and therapy provision report low confidence and inconsistency in their approach. This study contributes to the guidance by providing a shortlist of usable and priority adaptations for diagnostic and therapy services as described by multidisciplinary staff members responsible for the design and delivery of a specialist autism service in the UK. Individual freelisting interviews were conducted with 15 staff, who were asked to list the ways that they adapt their practice individually, within therapy, and collectively as a service. Salience and cultural consensus analyses demonstrated the following agreed priority service adaptations: ensuring the suitability of the service environment with consideration of sensory demands, adapting communication, knowing individual gender identity preferences and minimising client uncertainty. Detailed examples are given for flexibly adapting therapy to individual needs to inform general and specialist services. The findings require replication and evaluation