Since the findings of a Fatal Accident Inquiry (FAI) in 2010, clinicians working in Scotland have been advised to discuss the risk of Sudden Unexpected Death in Epilepsy (SUDEP) with patients immediately or soon after a diagnosis of epilepsy is made. A thematic analysis was used to describe the experiences discussing SUDEP of 10 clinicians (six Consultant Neurologists and four Neurology Registrars) working in Scotland. Five themes were found: Clinicians employ a ‘SUDEP protocol’, suggesting there is a standardised way of discussing SUDEP with patients and all clinicians routinely discuss SUDEP with newly diagnosed epilepsy patients; The FAI has diffused into practice through meetings and discussions with colleagues; ‘Breaking Good News’ refers to the ambivalence clinicians feel about discussing SUDEP; ‘Falsely anticipating anxiety’ refers to clinicians anticipating a distressed response from patients despite this very rarely occurring; Clinicians suggest that ‘pressure hinders effective communication’ to patients – suggesting that the pressure to discuss SUDEP early after diagnosis may have an emotional impact on patients and affect the amount of information they can take in. Implications for guideline development are discussed.

Background: Prevalence of psychosis is known to be higher in adults with intellectual disabilities (ID) than in the general adult population. However, there have been no attempts to develop a psychosis screening tool specifically for the adult ID population. The present study describes the development and preliminary evaluation of a new measure, the Glasgow Psychosis Screening tool for use in Adults with Intellectual Disabilities (GPS-ID). Method: An item pool was generated following: 1) focus groups with adults with ID and psychosis, and their carers and/or workers; 2) expert input from clinicians. A draft scale was compiled and refined following expert feedback. The new scale, along with the Psychotic Symptom Rating Scales was administered to 20 adults with ID (10 with and 10 without psychosis) and their relative or carers. Results: The GPS-ID total score, self-report subscale and informant rating-subscale differentiated psychosis and non-psychosis groups. The tool had good internal consistency (Cronbach’s α=0.91), and a cut-off score ≥4 yielded high sensitivity (90%) and specificity (100%). The method of tool development supports face and content validity. Criterion validity was not supported. Conclusions: Preliminary investigation of the tool’s psychometric properties is positive, although further investigation is required. The tool is accessible to adults with mild to moderate ID and can be completed in 15-30 minutes. The GPS-ID is not a diagnostic tool, therefore any adult exceeding the cut-off score of ≥4 should receive further assessment.

Background: Despite considerable political, social and empirical interest in drug treatment programmes the factors that assist heroin withdrawal remain elusive. Legal coercion is frequently used to provide leverage for drug users to enter treatment, however what programmes are most effective for heroin users and in what circumstances remains unclear. Aim: To explore dimensions of coercion from the perspective of participants on heroin withdrawal programmes across a range of treatment contexts. Method: A mixed methodology approach was adopted using semi structured qualitative interviews and psychometric measures of preparedness for treatment (e.g. SOCRATES) with heroin addicts in treatment in criminal justice and non-criminal justice settings (prison, inpatient, probation and outpatient programmes in the north west of England). An opportunistic sampling approach was used and 72 participants were recruited for data collection at treatment entry, with six month follow up data being obtained from 48 participants. Qualitative data utilised thematic analysis, whilst appropriate parametric and nonparametric procedures were employed with the quantitative data. Research ethics approval was obtained from the relevant university and NHS committees. Results: The probation treatment group did not recruit any participants. For the remaining groups the influence of formal and informal coercion was examined on treatment retention and completion rates. The smallest benefits for treatment effectiveness were found in the outpatient treatment group who were the least formally coerced. Confidence and self-efficacy scales demonstrated relationships to greater treatment effectiveness. The study suggests that informal coercion perceived by participants from their family with self-motivation may have more influence than formal criminal justice system coercion. Discussion and Conclusion The risk of attrition from all the groups presents challenges to researchers and treatment teams. The psychometric measures including treatment confidence and self-efficacy could be used by clinical staff to monitor for early signs of treatment attrition when those scores reduce during treatment The qualitative data suggested that self-motivation for change and family generated pressures seemed to underpin more positive changes in drug habits, suggesting that drug treatment programmes should consider family pressures/influences and individual construal’s of coercion, that are perhaps as important in terms of treatment retention as criminal justice sanctioned approaches. What is known? Legal coercion is widely used to pressure individual drug users into treatment that would not have otherwise commenced treatment at that stage (Perron and Bright, 2008). Legal coercion involves court imposed sanctions that are enforceable by further punishments. Legal coercion can involve probation drug outpatient treatment orders or prison treatment, but both require consent for that treatment from the participant (Hough et al, 2003; Miller and Flaherty, 2000). Outpatient treatment for heroin treatment was established to reduce viral transmission to high risk drug users and the mainstay of treatment was the heroin substitute methadone. On one hand coercion to enter treatment is important politically to reduce crime figures and enforce treatment on drug related offenders who would not have otherwise chosen to do so (Anglin et al, 1988). On the other hand, coercive approaches are not very well understood with poor completion and retention rates (Klag et al, 2005). Treatment for heroin addiction may require a range of approaches and treatment settings, but this is not assisted by the confusion within the literature regarding the effectiveness of coercion. Some advocate that the desire to enter treatment must originate from the individual (Polcin, 2006). However, others suggest that coercion can help those who may not have done so, to access heroin treatment resources (Anglin, 1989). What this study adds Essentially legal coercion is only one form of pressure that operates on individuals to enter drug treatment programmes and other constructs must be considered to select the right person for the right programme. Individual participants felt supported at the same time as being pressured, and construed that pressure as constructive. Social coercion operated across the groups irrespective of treatment being court sanctioned or not, and voluntary outpatients, for example, may be considered coerced from their family members. This study suggests that treatment confidence, attributional correlates, family involvement and self-efficacy, all operate at an individual level and improve treatment effectiveness when present coerced or otherwise. The inpatient and prison groups had improved outcomes for heroin treatment effectiveness, but the outpatient group in terms of heroin reduction or abstinence did not. The prison and inpatient treatment groups do benefit from treatment, but that prison incarceration must be opportunistic and not a mainstay of heroin addiction treatment. Investigating the group differences between the outpatient and inpatient group provides an opportunity to explore group differences. Irrespective of which contexts participants are treated, attrition rates are typically high and the mechanisms that lead to attrition in this study would have benefitted from data on those who left the study, to compare against those remaining (Jacobson, 2004). Structure of study: Chapter one begins by setting out the background aims and objectives, and describes how the study has assembled the evidence gathered. The chapter also explores drug treatment contexts and modalities. Chapter two provides the literature and explores the nature and extent of coercive drug treatments across the study treatment settings. Literature from significant mental illness coercion studies is considered. Chapter three considers the study mixed method approach to investigate the phenomenon to highlight the challenges investigating coercion and the influence of coercion upon individual drug users. A range of data measures administered and findings commence in chapter four; that include demographics, substance use history, criminal behaviour and treatment differences between participants across three treatment contexts. Chapter five reports participant qualitative data and results. Chapter six considers the range of factors at treatment entry that contextualises participants in programme treatment settings. Chapters seven and eight provide the remaining quantitative results that report on outcomes between treatment entry interviews and follow up. Discussion of findings from the study are set out in chapter nine. Chapter Ten examines study methodological considerations and limitations. Chapter eleven concludes with original contributions to knowledge, implications for practice and policy and recommendations for further research.

Background: Quality of life (QoL) is known to be lower in people with psychosis than the general population. Physical activity (PA) has been suggested as one way to improve QoL, but little is known about the relationship between PA and QoL in people with psychosis. No known research has implemented mixed methods (MM) to explore PA and QoL in people with psychosis. Aim: To explore if and how PA is associated with QoL in people with psychosis. Methodology: A MM design was implemented which consisted of three studies. Study one was a cross-sectional survey design, which assessed the relationship between PA and QoL (n=79). Study two was a phenomenological study which involved conducting semi-structured interviews with people who were perceived to be active by professionals or themselves (n=8). Study three entailed conducting focus groups with mental health professionals which were analysed using thematic analysis (n=10). Results: Study one: Those achieving PA guidelines scored significantly higher on physical QoL than those who did not meet the guidelines. Moderate and vigorous intensity PA were related to physical QoL and walking was associated with better social functioning. No PA variables were related to mental QoL. Study two: Four major themes emerged: 1) cocooned in a web of lethargy and tangled thoughts, 2) Experiencing a snapshot of reality, 3) Being ‘normal’, 4) Dance as if no-one is watching. Study three: Four major themes were found: 1) Service provision, 2) Professional interpretation of policy, 3) Professional personal experiences and beliefs, 4).Negative experiences. Upon synthesising the outcomes of the studies it was concluded that if PA was seen as meaningful to the individual it was beneficial for QoL. PA emerged as meaningful for the participants for the following reasons: it was perceived to develop self; provide time-out from symptomology; present the opportunity to break free into a real and social world; and enable self, mind and body to feel they belong and therefore feel ‘normal’. However, the type, intensity, amount of PA and the stage of the participants’ illness were all seen to influence the perceived impact on QoL. A number of implications for supporting PA services within Mental Health Trusts were suggested. The main finding in relation to service implications was that PA needs to be provided consistently and not in an ad-hoc manner which was found to be detrimental to Service Users routine and autonomy. Further, it is suggested that a broader range of PA provision should be available for those with psychosis to suit individual needs. However, consideration should be given to the intensity, amount and type of PA as well as the perceived severity of the illness. Conclusion: The findings from this thesis add support to the proposition that PA can be used to enhance QoL in people with psychosis. Professionals are encouraged to promote PA, with the caveat that it should be perceived to be meaningful by the individuals with psychosis.

Objective: The present study aimed to investigate the factors relating to mood and cognition which influence a person’s ability to participate in rehabilitation after Acquired Brain Injury (ABI). It was hypothesised that impairment in cognition, including specific impairment in executive functioning and depression would be associated with poorer engagement in rehabilitation. Method: Twenty-nine patients undergoing rehabilitation following stroke (89.7%) or TBI (10.3%) participated. Individuals recruited completed the Hospital Anxiety and Depression Scale as a measure of mood and an executive functioning test battery. Data collection occurred over a two week period as concurrent ratings of participation were gathered from physiotherapists and occupational therapists using the Pittsburgh Rehabilitation Participation Scale. Results: In support of the hypotheses, correlation analysis showed a significant positive correlation between participation in rehabilitation with executive functioning (p < .05) and a significant negative correlation between participation in rehabilitation and low mood (p < .05). No association was found between general cognitive ability, functional disability, time since injury, age, gender and participation.

Objectives: To study autism spectrum disorder (ASD) in the Faroe Islands, including prevalence, diagnostic stability and environmental factors that are potentially involved in the aetiology of autism. Method: I. The target group was recruited from the entire population sample of participants with ASD during a two-phase screening and diagnostic process of the entire Faroe Islands population in the relevant school age group born between 1985-1994 (7-16 years, n=7,689) in 2002 and again in 2009 (15-24 years, n= 7,128) using an independent clinical diagnosis and standardised tools. II. The diagnostic stability of ASD from childhood to early adulthood over a period of 7 years compared diagnoses in 2002 and 2009. III. A literature search of vitamin D and ASD covering the period from January 1 1995 to October 31 2011 was carried out. IV. A pilot study involved questioning 20 mothers of young individuals from the target group and 13 mothers of healthy comparisons, regarding mothers’ diet habits, health, life-style and well-being during their pregnancy with an index child. V. 25-hydroxyvitamin D3 (25(OH)D3) levels were examined in a population based cross-sectional study that involved 219 individuals: 40 participants with a diagnosis of ASD from the target group (31 males/9 females), their 62 typically developing siblings (29 brothers/33 sisters), their 77 parents (40 mothers/37 fathers), and 40 healthy comparisons (28 males/12 females). Results: I. The rate of ASD rose significantly from 0.56% (n=43) in 2002 to 0.93% (n=66) in 2009. Although these results were still within the range of typical findings from other studies, of the 24 newly discovered cases in 2009 nearly half were females thus altering the male/female ratio from 6/1 to 2.7/1. II. The stability of clinical ASD diagnosis was perfect for AD, good for “atypical autism”/PDD-NOS, and less than perfect for Asperger syndrome (AS). Stability of the diagnoses made by means of research tools were more variable but still good for AD. Both systems showed excellent stability over the seven-year period for “any ASD” diagnosis, although a number of clear cases (especially in females) had been missed in the original screening in 2002. These results support the notion that a single overarching diagnostic category, ‘autism’ or ASD, would better suit clinical realities as outlined in the new DSM-5. III. The systematic review (in 2010) provided some, albeit very limited, support for the possible role of vitamin D deficiency in the pathogenesis of ASD: there are three main areas of involvement of vitamin D in the human body that could potentially have direct impact on the development of ASD: (1) the brain, (2) gene regulation and (3) the immune system. The prevalence of ASD has been suggested to be raised at higher latitudes. IV. Mothers of individuals with ASD had had during their pregnancy significantly less positive “attitude to sun” (p=0.001), consumed fewer vegetables (p=0.026) and also less fruit (p=0.078). V. The ASD case group had significantly lower 25(OH)D3 levels (24.8 nmol/L) than their typically-developing siblings (42.6 nmol/L, p<0.001) and their parents (44.9 nmol/L, p<0.001), and also significantly lower than healthy age and gender matched comparisons (37.6 nmol/L, p=0.002). There was a trend for males having lower 25(OH)D3 levels than females. There was no association between vitamin D and age, month/season of birth, IQ or subcategories of ASD. Among the ASD group, 60% were severely deficient (<30 nmol/L) and 84.2% of the whole study sample (n=219) had deficient/insufficient levels (<50/<75 nmol/L). Conclusions: I. ASD prevalence in the Faroe Islands increased from 0.56% in 2002 to 0.93% in 2009 mainly due to missed cases in 2002, nearly half of them females. II. There was diagnostic stability for the overall category of ASD over time in the group diagnosed in childhood (7—16) years, but considerable variability with regards to diagnostic sub-groupings. Diagnosing females require novel approach. III. Vitamin D deficiency–either during pregnancy or early childhood–may be an environmental trigger for ASD in individuals genetically predisposed to the broad phenotype of autism. IV. There are some interesting differences in the diet and life-style habits between mothers with a child with ASD and mothers with a healthy child. The ASD-group’s negative “attitude to sun” may indicate some life-style/health differences which may play a role in pathogenesis of ASD, especially in combination with other environmental risk factors. V. The present study, demonstrating an association between low levels of 25(OH)D3 and ASD, is the first to be based in a total population and to use siblings, parents and general population control groups. It adds to similar findings from other regions of the world, indicating vitamin D deficiency in the population and especially in individuals with ASD. As all groups were exposed to low levels of sunlight, the very low 25(OH)D3 in the ASD group suggests that some other underlying pathogenic mechanism may be involved.

Recovery from Traumatic Brain Injury (TBI) is a lengthy and complex journey. The ability to Return to Work (RTW) is often severely compromised and not easily predicted by medical sequelae. Recent qualitative research has highlighted the importance of the environment and the support available. Despite this, little is known about how people present in their workplaces, manage their own impressions and how they use support to re-establish their workplace identity. This qualitative study using a multiple case study approach explores two RTW journeys. Each case includes the person with TBI and others identified as being helpful in the process. Data were collected over two years at six time points using semi-structured and unstructured interviews, genograms and social networks diagrams. Analysis has been informed by the work of Goffman (1959). The findings are presented in keeping with Goffman’s dramaturgical metaphors. Individuals offer many performances that are shaped by their interactions with others, each performance requiring the actor to project an accepted front so that the audience may view their performance as authentic. The thesis highlights how workplace fronts become disconnected in four key areas (appearance, manner, emotion and work skills) following a TBI and how a sense of connectedness is re-established over time. The findings highlight the importance of stage areas and how these distinct areas impact on the type of performance given and how it is supported by workplace and non-workplace actors to shape and save the performances that a person with a TBI is required to give in the workplace. I conclude that RTW is not a simple linear process but involves complex interactions between the individual with TBI and the workplace environment, employers, health care professionals, family and friends. I propose that the dramaturgical metaphor offers a way of understanding the complexities associated with RTW and re-framing the possibilities for RTW programmes.

Technologies such as automobiles or mobile phones allow us to perform beyond our physical capabilities and travel faster or communicate over long distances. Technologies such as computers and calculators can also help us perform beyond our mental capabilities by storing and manipulating information that we would be unable to process or remember. In recent years there has been a growing interest in assistive technology for cognition (ATC) which can help people compensate for cognitive impairments. The aim of this thesis was to investigate ATC for memory to help people with memory difficulties which impacts independent functioning during everyday life. Chapter one argues that using both neuropsychological and human computing interaction theory and approaches is crucial when developing and researching ATC. Chapter two describes a systematic review and meta-analysis of studies which tested technology to aid memory for groups with ABI, stroke or degenerative disease. Good evidence was found supporting the efficacy of prompting devices which remind the user about a future intention at a set time. Chapter three looks at the prevalence of technologies and memory aids in current use by people with ABI and dementia and the factors that predicted this use. Pre-morbid use of technology, current use of non-tech aids and strategies and age (ABI group only) were the best predictors of this use. Based on the results, chapter four focuses on mobile phone based reminders for people with ABI. Focus groups were held with people with memory impairments after ABI and ABI caregivers (N=12) which discussed the barriers to uptake of mobile phone based reminding. Thematic analysis revealed six key themes that impact uptake of reminder apps; Perceived Need, Social Acceptability, Experience/Expectation, Desired Content and Functions, Cognitive Accessibility and Sensory/Motor Accessibility. The Perceived need theme described the difficulties with insight, motivation and memory which can prevent people from initially setting reminders on a smartphone. Chapter five investigates the efficacy and acceptability of unsolicited prompts (UPs) from a smartphone app (ForgetMeNot) to encourage people with ABI to set reminders. A single-case experimental design study evaluated use of the app over four weeks by three people with severe ABI living in a post-acute rehabilitation hospital. When six UPs were presented through the day from ForgetMeNot, daily reminder-setting and daily memory task completion increased compared to when using the app without the UPs. Chapter six investigates another barrier from chapter 4 – cognitive and sensory accessibility. A study is reported which shows that an app with ‘decision tree’ interface design (ApplTree) leads to more accurate reminder setting performance with no compromise of speed or independence (amount of guidance required) for people with ABI (n=14) compared to a calendar based interface. Chapter seven investigates the efficacy of a wearable reminding device (smartwatch) as a tool for delivering reminders set on a smartphone. Four community dwelling participants with memory difficulties following ABI were included in an ABA single case experimental design study. Three of the participants successfully used the smartwatch throughout the intervention weeks and these participants gave positive usability ratings. Two participants showed improved memory performance when using the smartwatch and all participants had marked decline in memory performance when the technology was removed. Chapter eight is a discussion which highlights the implications of these results for clinicians, researchers and designers.

Obstructive sleep apnoea (OSA) and insomnia are the two most prevalent sleep disorders. Their respective treatments Continuous Positive Airway Pressure (CPAP) and Cognitive Behaviour Therapy for insomnia (CBT-I), are effective, but at the same time challenging. It is this challenge that may translate to poor adherence, which ultimately leads to a reduction in treatment effectiveness. The evaluation of these treatments should not fall short of understanding effectiveness by only considering efficacy; the effort to establish what influences adherence makes up a large part of that goal. The aim of this thesis is to contribute to the literature by adopting a biopsychosocial approach (BPS). That is, the consideration of biomedical, psychological and social factors and how they interact to influence behaviour. The implications for both CPAP and CBT-I adherence literature were tested in the context of four experimental studies. Semi-structured interviews were conducted with 11 CPAP users, with 5 individuals completing the three required interviews prior to, at 1 week and 3 months after treatment initiation. The core themes emerging from a thematic analysis were ‘internal conflict around acceptance and adherence’, ‘integration of CPAP into life’ and ‘motivators and resources for CPAP use’. The interviews with 11 individuals having completed a CBT-I program revealed three important issues: ‘Making sense of CBT-I’, ‘Ongoing evaluation of components’ and ‘Obstacles to implementation’. Both studies reveal potential psychological and social factors contributing to adherence to CPAP and CBT-I, which need to be considered in a BPS framework. A patient-level meta-analysis of three randomised placebo-control studies showed that the relationship between CPAP adherence and improvements in daytime sleepiness was caused by both physiological (high use of real CPAP reduced sleepiness more than high use of placebo and more than low use of real CPAP) and psychological effects (high use of placebo was superior to low use of placebo), possibly as a result of an expectation of benefit. The results support the importance of considering both biomedical and psychosocial factors and their interactive effects on adherence. The translation of the BPS approach to clinical practice will be facilitated by the development of brief, reliable and valid measures to assess psychological iii and social variables in addition to the existing biomedical tools. The Stage of Change Scale for Insomnia (SOCSI) assessing components of the transtheoretical model (stage of change, self-efficacy, decisional balance and processes of change), was constructed and cognitively pre-tested in 13 individuals completing CBT-I. The reliability and validity of this comprehensible scale was subsequently examined in the context of a sleep restriction trial. Insomnia-related symptoms at post-treatment and follow-up, which were significantly different from baseline in the 27 individuals with insomnia, were associated with actigraphdetermined adherence to the agreed bed window. The SOCSI was deemed a valid tool with participants in the self-identified action/maintenance stage revealing significantly better adherence, higher motivation and self-efficacy than those in the contemplation and preparation stage. Test-retest reliability of the SOCSI was excellent and the content analysis of open-box responses revealed information for further validation of decisional balance and processes of change scales. This thesis provides novel information about the variables that influence adherence to CPAP and CBT-I. It distinguishes itself from previous efforts by acknowledging the need for the adoption of a BPS framework. This approach is necessary to successfully advancing not only the CPAP and CBT-I adherence literature individually, but potentially the adherence field in general.