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There are clear indications that over the coming years, as more people live longer with life limiting illnesses an increasing amount of support for carers of service users with palliative care needs will be required. Respite care is often described in UK policy and guidance as a key need in providing this support and yet little is known about it for patients with life limiting illnesses and there is a lack of research to support its efficacy. The purpose of this research was therefore to establish whether respite care addresses the needs of palliative care service users and carers. The approach was qualitative and the methodology was interpretive. The method used was constructivist Grounded Theory. This provided high compatibility with the theoretical underpinnings which were learning from the experiences of service users and carers, embracing the principles of critical practise and learning through relational endeavour. Data collection was carried out by unstructured informal interview with three couples and two bereaved carers who had experienced hospice respite care. The participants were interviewed on two occasions and social network circle activity was undertaken as part of theoretical sampling. Findings showed that respite care is valued by palliative care service users and carers although there are some fundamental tensions in service models which limit its potential. A theory of vulnerability and resilience was developed which accommodated issues of needs and acceptance, choice and risk, loss and gains. A reframing of respite care as an empathic response within a new palliative care approach is proposed. Within this the centrality of the relationship is reinforced and the need for support over a potentially long and more uncertain illness trajectory is acknowledged. The articulation of respite care needs and the insights gained in this study have the potential to influence practice and provide a platform for innovative service development and improvement.

Poor quality and unrefreshing sleep is one of the most common symptom complaints in Chronic Fatigue Syndrome (CFS). Despite this, the links between sleep dysfunction and CFS are not well understood, and there has been an absence of good quality research into the nature of sleep problems in CFS, which also lack consistency in the data reported. However, it remains plausible that sleep problems may help to maintain and exacerbate other existing symptoms. Given the dispute in models ranging from the biological to the psychological, competing to explain symptomology, it is a critical time by which we try to understand the relationship between poor sleep, fatigue, endocrine activity and CFS, in an attempt to shortcircuit this debate. With an aim to redress this, this thesis intended to examine the role of sleep from several angles, utilizing a range of assessment methods; Study 1 addressed the lack of in depth qualitative interview studies, to understand the extent to which sleep, its management and problems, are linked to the lived experience of CFS, and how it interacts with other symptoms (chapter 3). Patient narratives demonstrated that sleep disturbances experienced were highly unpredictable and variable over time, but played a key role in symptom maintenance; Study 2 examined self-reported sleep (via sleep diaries) in CFS patients, exploring whether sleep quality and daytime napping had an impact on daytime fatigue, sleepiness and cognitive functioning (key dimensions of the illness experience) (chapter 4). The results were highly variable but indicated that afternoon-evening napping was associated with greater impairment in daytime cognitive functioning in CFS patients. It was also evident that CFS patients with longer wake time and a shorter diagnosis had more severe fatigue; Study 3 explored the possibility that sleep problems in this population are not homogeneous and revealed four sleep-specific phenotypes to exist, which are amenable to different treatment approaches. The initial cross-sectional examination of single-night polysomnography (PSG) data identified 30% of the sample had a primary sleep disorder (PSD), which underscores the need to assess for PSDs in CFS populations (chapter 5); Study 4 was conducted to address the principle aim of this thesis; to determine the feasibility of a detailed, 3-night sleep assessment protocol in a small cohort of CFS patients. By utilising iv a range of methods including ambulatory PSG and a gold-standard protocol for sampling of diurnal salivary cortisol, the study piloted the most comprehensive assessment of sleep ever attempted in a CFS population. The findings established a successful protocol that was acceptable to patients (chapter 6), a key advancement in this field where effective and thorough sleep assessment is needed. Preliminary sleep data confirmed a notable variability of sleep problems to exist. Further, the temporal stability of sleep variables was established; sleep continuity (sleep duration, wake duration, sleep efficiency) and main architectural (sleep stages) parameters were consistent across two nights of assessment (chapter 7). The results presented in this thesis indicate that disturbed sleep is a major problem for patients with CFS, albeit highly variable between and within individuals. The identification of sleep phenotypes also confirms the heterogeneity of sleep in CFS. Interestingly, light sleep and arousability was a recurring sleep characteristic in patients that was mirrored by the studies presented throughout the thesis, highlighting a potential autonomic component. This should be a consideration for forthcoming work, along with the possibility that sleep disturbances may mediate the maintenance and exacerbation of symptoms, fuelling a reciprocal cycle that keeps the condition going. The preliminary findings presented throughout this trajectory of research will help to form the systematic development of a sleep characterisation and intervention programme. With this field moving towards more patient-centred medicine and tailored treatments, by combining data from the objective and subjective sleep measures, we aim to design a definitive multicentre study, using sleep-specific interventions, amenable to the four phenotypes identified. The long-term goal is to improve treatments that will enhance symptom management, which is crucial in this condition, at least until the CFS research understands the pathogenesis of this debilitating disease.

Background: The MMSE is commonly used as a screening instrument for cognitive impairment in stroke services. However, recent research has shown that it has poor diagnostic validity for use in this patient population. The purpose of this study was to examine the validity of the ACE-R as an alternative screening measure for use in stroke. Objectives: The first objective was to determine whether the ACE-R is more accurate than the MMSE at detecting overall cognitive impairment in stroke. The second objective was to determine the accuracy of the ACE-R subscales for detecting impairments in specific cognitive domains. Methods: This study had a cross-sectional design. 40 patients were recruited from an inpatient stroke service. They were administered the ACE-R (which includes the MMSE), and a battery of more detailed neuropsychological tests, which served as the ‘gold standard’ for classification of impairment. The diagnostic validity of the ACE-R and MMSE was determined by ROC analysis. Results: Both the MMSE and the ACE-R were found to have inadequate diagnostic validity for the detection of overall cognitive impairment. No cut-scores scores could be identified which yielded test sensitivity of >80% and specificity of >60%. Levels of specificity were particularly poor. The ACE-R subscales showed a similar pattern of performance, indicating inadequate validity for the detection of impairment in specific areas of cognitive functioning. Conclusions: There was no support for the use of the MMSE or the ACE-R when screening for cognitive impairment in acute stroke. Further research should focus on the identification of an alternative measure.

Background: The MMSE is commonly used as a screening instrument for cognitive impairment in stroke services. However, recent research has shown that it has poor diagnostic validity for use in this patient population. The purpose of this study was to examine the validity of the ACE-R as an alternative screening measure for use in stroke. Objectives: The first objective was to determine whether the ACE-R is more accurate than the MMSE at detecting overall cognitive impairment in stroke. The second objective was to determine the accuracy of the ACE-R subscales for detecting impairments in specific cognitive domains. Methods: This study had a cross-sectional design. 40 patients were recruited from an inpatient stroke service. They were administered the ACE-R (which includes the MMSE), and a battery of more detailed neuropsychological tests, which served as the ‘gold standard’ for classification of impairment. The diagnostic validity of the ACE-R and MMSE was determined by ROC analysis. Results: Both the MMSE and the ACE-R were found to have inadequate diagnostic validity for the detection of overall cognitive impairment. No cut-scores scores could be identified which yielded test sensitivity of >80% and specificity of >60%. Levels of specificity were particularly poor. The ACE-R subscales showed a similar pattern of performance, indicating inadequate validity for the detection of impairment in specific areas of cognitive functioning. Conclusions: There was no support for the use of the MMSE or the ACE-R when screening for cognitive impairment in acute stroke. Further research should focus on the identification of an alternative measure.

Background Sensory sensitivity (SS) is defined as the level to which an individual is able to regulate their responses to sensory input. Children with Autistic Spectrum Disorder (ASD) have been found to display unusual and abnormal levels of SS. These variabilities in SS have been associated with poorer levels of adaptive behaviour, behavioural difficulties and emotional problems. Parental questionnaires are frequently used to assess children’s SS. However concern has been raised regarding the use of parents as the sole informant. This study aimed to assess whether parental reports of children’s SS were consistent with alternative informants’ (school staff) reports. Methods The Short Sensory Profile (SSP: Dunn, 1999) was administered to 72 pairs of parents/caregivers and school staff, to be completed for children with ASD (aged 4 to 18 years). This 38 item questionnaire highlights variations of sensory modulation and provides a total score, and 7 factor/subsection scores relating to different aspects of sensory processing (e.g. auditory filtering). This study utilised intraclass correlation coefficient (ICC) values to assess the level of agreement.

In 2011 it was estimated that in Thailand there were 498,800 stroke survivors of both sexes but most were over the age of 65. They were served by only 625 occupational therapists (OTs). Occupational therapy (OT) plays a key role in the rehabilitation service for stroke patients, in particular, by enabling stroke survivors to reengage with activities of daily living and to resume work or family tasks. OT needs to be culturally appropriate and relevant to the therapists, stroke patients and their families. The Occupational Therapy Mahidol Clinic System (OT-MCS) has been designed to be culturally relevant and is based on collaborative teamwork which can better address the needs of the stroke patients. OT-MCS was introduced in 6 regional OT clinics. This study compared perceptions of stroke clients who took part in the new approach 8 weeks before and during the rehabilitation. One hundred and twenty stroke participants were divided into 2 functional groups (slow and fast stream rehabilitation). Stroke participants (N=120) and OTs (N=60) explored the arrangement of activity items into domains for creating a new activity card sort (ACS). Sixty stroke participants (slow stream rehabilitation) and 60 OTs were surveyed to investigate the attitudes of “satisfaction” and “importance” via 40 therapeutic activities. Sixty stroke participants (fast stream rehabilitation) evaluated the levels of their activity engagement in diverse cultural-therapeutic activities. Lastly, 23 stroke participants (slow and fast stream rehabilitation) were interviewed in order to ascertain their lived experiences after the use of OT-MCS and the data were analysed using thematic analysis. The integrated analysis demonstrated strong satisfaction and engagement with OT-MCS. The use of the activity catalogue met with positive attitudes from the stroke participants and in particular the collaborative approach of OTs and participants gave meaning to the activities and a sense of self management. In addition in the fast stream rehabilitation participants reported satisfaction with the transferability of the activities to the home and external environment and their relevance to supporting family life. The OT-MCS for Thai stroke rehabilitation is a comprehensive OT service, which improves the perception of benefit in stroke clients enabling them to perform meaningful and purposeful activities based on their local and regional lifestyles. This culturally appropriate approach helps stroke clients to re-develop their life-skills. Through the use of meaningful and relevant activities which meet their specific needs, stroke clients can lead more satisfying and fulfilling lives.

This thesis describes thirteen published works which constitute an evolving programme of research into service user and carer participation in old age psychiatry. They share the common objective of extending knowledge and understanding of methodologies, benefits and challenges of service user and carer participation in old age psychiatry services. The publications contribute to knowledge in three areas. The copying of letters to users and carers, and requests for their feedback on the practice, was described as part of routine practice in old age psychiatry: this research addresses the area of „users and carers as recipients of communication‟. „Users and carers as subjects of consultation‟ is addressed by several publications: an evaluation of users‟ experience of electro-convulsive therapy and later development of a method of integrating feedback from users into practice; a similar method was applied regionally in service improvement in order to access users‟ and carers‟ views and use them to identify areas for improvement work, and nationally by a professional organisation to inform and develop its work programme. The third area of contribution is that of „users and carers as agents in control‟ and this is addressed in an initiative in higher education where users and carers were agents of control in designing, delivering and evaluating an MSc module on user and carer experience. The contribution of the publications is related to four overall objectives: ways in which users and carers participate in old age psychiatry services; the benefits and drawbacks of user and carer participation in old age psychiatry services; ways of conceptualising user and carer participation in old age psychiatry; and finally, potential areas for future research in user and carer participation in old age psychiatry.

Pain is multidimensional and self-management is advocated to manage the biopsychosocial impact of this on individuals’ lives. Thus, these individuals’ perspectives regarding self-management have been explored. This study aimed to firstly explore how self-management was understood in the context of low back pain through the experiences of people living with low back pain and physiotherapists’. This then led to informing the development of an education programme for physiotherapists to support self-management. The study used a mixed method approach, which involved three phases being carried out over a period of time with each informing the subsequent phase. Phase 1, a qualitative synthesis examined primary qualitative research focusing on people living with low back pain and physiotherapist experiences of self-management of low back pain. The synthesis informed phase 2, two qualitative studies addressing areas of paucity found within the literature. The final phase, a feasibility study involved the development of an education programme for physiotherapists who completed pre and post outcome measures. Focus groups were also used in evaluating the intervention. The qualitative synthesis revealed a limited amount of literature regarding physiotherapists’ views and experiences of self-management of low back pain. A large proportion of studies that related to physiotherapy focusing on people living with low back pain experiences of self-management concentrated on strategies, in particular exercise with limited relation of this to daily life. The primary qualitative studies highlighted some difficulties physiotherapists faced when supporting the management of the biopsychosocial impact of LBP. Further, at times self-management could be used as a last resort. In relation to this, half of the people interviewed living with low back pain found this to be restricting their daily activities and were fearful and concerned regarding worsening pain in the future. These findings suggested people were not managing the biopsychosocial impact of low back pain and physiotherapists at times viewed influences on the pain experience as separate rather than integrated. Pain neurophysiology education linked to clinical practice was used to demonstrate the integrated nature of the pain experience, be relevant to physiotherapists and ultimately facilitate biopsychosocial self-management through enhancing understanding of the multidimensional nature of pain. Collectively, this thesis has developed understanding of self-management from the physiotherapist perspective, illuminating the support required for physiotherapists and revealed physiotherapists value pain neurophysiology education linked to practice however further support is required to implement this in clinical practice.

Assumptions are our taken for granted interpretation of the world. They are identified as important in reasoning, sense making, behaviour and action. Anecdotal evidence from users of neurological rehabilitation services suggest that assumptions influence how they are perceived and related to, impacting on their experiences of inclusion. This study investigates the assumptions held by service users and staff about neurological rehabilitation, examines their influence on inclusion and explores the conditions influencing change in assumptions. This doctoral study drew largely on data generated as part of a funded research project, which investigated perceptions of inclusion and inclusive practice in neurological rehabilitation. Both the funded research project and this study adopted a participatory action research approach, using photography, mapping, diaries, interviews and focus groups to generate data. Additional data was generated for this doctoral study through a workshop and reflective questionnaire which focussed specifically on assumptions. Data analysis and sense making used framework analysis and a thematic approach. Research participants and critical friends contributed to validation of findings. The findings identified that assumptions do form the basis for interactions and practices that influence whether neurological rehabilitation is inclusive and/or effective. Addressing assumptions requires that specific attention and scrutiny are given to situations where taken for granted thought has been disrupted, therefore, creating opportunities for critical dialogue and new understanding to be developed. Importantly, when service users and staff work collaboratively to ask the question “how do we do this together” assumptions of role, knowledge and expertise can be challenged and inclusion facilitated. The study recognises that addressing assumptions in practice requires a change in the way of working in neurological rehabilitation. A re-framing of practice is called for and a critical relational ontology proposed to replace the currently advocated person centred approach, with the acknowledgement that this is likely to radically challenge current principles and practices in neurological rehabilitation.