Lay health workers have been widely used to deliver health improvement activities in developed and developing countries. Although there is some data to support their efficacy, reviews of the research literature have consistently found insufficient evidence to assess which intervention strategies are likely to be most effective. Furthermore, there is a dearth of research exploring service user views and experiences. This study contributes to evidence and theory in relation to lay-led models of promoting lifestyle change. By adopting a grounded theory methodology underpinned by a subtle realist perspective, the study aimed to understand better the experiences of users and the mechanisms underlying intervention outcomes. The focus for this research was the NHS Health Trainers Initiative, which is part of an attempt to shift the emphasis in UK public health from ‘advice on high to support from next door’. Participants were sampled from three heterogeneous health trainer services in northern England. Semi-structured interviews with service users (n=26) were conducted at 0, 3, 6 and 12 months, and with health trainers (n=13) and their managers (n=5) at 0 and 12 months. A longitudinal approach was chosen to allow for a more in-depth exploration of the processes involved in attempting to make and maintain health-related behaviour changes. Informal observations of selected health trainer activities were also undertaken in order to generate additional data for triangulation. All data were analysed using the constant comparative method. Health trainers were found to employ a tailored, holistic approach that takes into account the context of a person’s life and their access to resources for health. This builds upon the salutogenic theory of health, and is in direct contrast to the paternalistic, deficit model traditionally found in public health. It also draws on theories of ‘person-in-situation’ more commonly found in the social work literature, which present an alternative to the emphasis on person-centredness and psychological aspects of behaviour change. An integrated model is developed – called the theory of lay-led behaviour change in context – and contrasted with the logic models typically used to conceptualise similar interventions. This research is one of few qualitative studies to investigate the role of lay health workers in the UK. Furthermore, the use of a longitudinal approach to explore behaviour change has produced results that are likely to have high policy relevance. The research represents an important application of a user-focused perspective affording new insights, which may also be applied to other complex interventions.

Urinary incontinence is not a topic that is openly discussed in any society. Rather it remains a subject that attracts social stigma, isolation and embarrassment that inevitably restricts individuals seeking health care. Previous research conducted in this area provides useful information about the causes, complications, contributing factors, management options and outcomes. However, this research has predominantly been conducted in the White female population. Little is known about the effects of urinary incontinence within specific ethnic groups. Even less is known about the impact of UI in religiously motivated groups, such as the Muslim communities. This study helps to explore these insights, and aims to explore the religious and cultural influences on help-seeking behaviour and decision-making within South Asian Muslim women and the 'meaning' of urinary incontinence. This is a hermeneutic phenomenological study. Forty-one South Asian Muslim women living in the Northwest of England were interviewed using an open-ended interviewing technique. All interviews were tape recorded, and took between 1 to 2 hours to complete, as the data was allowed to unfold naturally and took a conversational style. Twenty-six interviews were translated into English from the original language of Urdu and Punjabi, the remaining fifteen were conducted in English. Transcribed and analysed data was then interpreted using the philosophical underpinning of phenomenology. The search for meaning in the text, and interpretation of the data resulted in the development of six major themes; 'it's the norm'; 'it's like a hush hush thing'; 'me, my family and I'; 'my religion my identity'; 'it's not cancer'; and 'get myself checked out'. Within each of the major themes sub-themes emerged. Clearly articulated was a balancing act; on one end of the scale was the participant and their health, and on the other was the family - which included cultural traits and religious beliefs, practices and views. In order to understand what these women are describing I draw upon Antonovsky's 'salutogensis' model and the 'five-fold medical knowledge' concept by Young, both of which gear towards the subjective interpretations that individuals apply to health, illness and wellness. A number of recommendations are made and suggestions for future research are also included as a result of the findings from this study.

Current educational guidelines require clear evidence of the involvement of service users across the nursing curriculum, but give no real direction as to how to achieve this, or clarity about what would constitute successful engagement. There is a limited body of literature that specifically addresses service user engagement in the classroom and this literature is largely evaluative in nature, small scale, single site, often atheoretical and many do not include service user perspectives. The studies present evidence of the value of service user engagement, albeit not in great breadth or depth, but fail to critically examine the actual processes and practices that contribute to the perceived success of service user engagement in the classroom. This study seeks to develop and strengthen the current understanding of service user involvement in nurse education and the way in which it is enacted in the classroom setting. In this study, the term ‘service user’ encompasses people, carers and families with experience of healthcare who are involved in teaching sessions with pre-registration nursing students for the purposes of sharing their life experiences. A participatory, Appreciative Inquiry approach was taken, using a series of appreciative workshops (n=8), observations of teaching (n=5) and interviews (n=3). These approaches ensured that there were opportunities for the participants to generate and share their stories and experiences of service user engagement. This participatory appreciative approach also ensured that all voices within the study were respected and that ethical considerations were attended to with high levels of sensitivity. These approaches also facilitated the critical consideration of the interactions, dialogues and relationships that occur between pre-registration nursing students, service users and lecturers. Data were analysed using a thematic narrative approach drawing on the principles of socio-narratology and considering three key components: setting, character and plot. Three themes were identified: the first ‘real world as opposed to what?’ focuses on setting; the second ‘students, service users, lecturers - there is a togetherness about it all’ addresses the characters within the classroom; and the third ‘involving service users has helped me grow as a student nurse’ considers issues related to plot. The overarching meta-theme, ‘mutual development through authentic relationships’, encompasses the idea that service user engagement is more than merely an action carried out by service users (sharing life experiences) for the benefit of students in their development as compassionate nurses. Instead, service user engagement is a complex and mutual set of interactions and relationships between service users, students and lecturers. These interactions and relationships occur within a distinct setting, are grounded in authenticity (where authenticity is interpreted as something which is real, genuine or true), and influence the development of shared narratives of service user oriented practice. The core contribution to knowledge from this study is summarised within a model of best practice for service user engagement that is built from the findings and based within contemporary theoretical thinking on service user engagement. The model presents a map of the journeys of students, service users and lecturers and the ideal classroom conditions for successful service user engagement. It also reveals the processes and practices that occur in classrooms and the profound, positive impact of service user engagement, such as nourishing the emotional lives of student nurses in a way that consolidates compassion. Recommendations for practice, policy and research are presented.

Oral care is essential in maintaining oral hygiene and oral health. When oral care is neglected individuals are at risk of oral and systemic complications affecting general health. Stroke patients are one group who are at risk of poor oral health due to their physical and cognitive dependency. Providing oral care is normally the responsibility of the nurses, and currently there is little evidence to support oral care provided. Through a series of studies this thesis aims to explore oral care in hospitalised stroke patients with the aim of developing an oral assessment to inform oral care. An integrative literature review examining oral assessments developed for use in a dependent population, identified that an oral assessment for use in stroke patients did not exist. The majority of oral assessments had been developed using the empirical literature and/or expert opinion, with a focus to assess oral health and cleanliness. Those assessments that were selected for review were found to be of a poor quality both in development and testing of psychometric properties. Where agreement had been tested, both within and between raters, agreement was variable across all items. The information gathered from the review was used to aid the design of a qualitative study to explore stakeholder’s views of oral care in stroke patients, and the development of a new oral assessment for use in stroke patients. An interpretive approach was utilised to explore the views and experiences of experts in oral health and stroke; health professionals’; patients’ and carers’. Two different methods were used to capture this data: one to one interviews for the experts in oral health and stroke, patients and carers; and focus groups for the health professionals. Eight experts were interviewed, five patients, five carers and the two focus groups with six/seven health professionals. The findings illustrated that oral care is complex, and assessment is only one component of this process. Five concepts relating to oral assessment were identified by all the groups: ability to attend to oral care; oral health and cleanliness of the oral cavity; comfort of the oral cavity; contributing factors; assessment format and layout. The findings from the qualitative interviews, focus groups, and the literature review, were presented to an expert panel that contained a representative from the oral health experts, stroke experts, health professionals, patients and carers. This group reviewed the data and, using a systematic approach, developed the new oral assessment; the Comprehensive Oral Assessment Tool for Stroke (COATS). Following development, the COATS was tested for within and between rater agreement, and diagnostic accuracy, in 82 stroke patients on an acute stroke unit. Agreement was tested, in registered and unregistered nurses, and ranged from fair to very good. The registered nurse showed better agreement than the unregistered nurse. The COATS also demonstrated in this initial testing that it could correctly identify a high proportion of patients either with or without a problem. This thesis has provided some novel findings that will contribute to the existing knowledge of oral care in a stroke and dependent population. It has provided an overview of the quality of oral assessments available to nurses looking after acutely ill patients as well as highlighting all the potential issues that need to be considered when implementing a new oral assessment into clinical practice.

Systemic lupus erythematosus (SLE) is a multisystem autoimmune disease. In the evaluation of patients with SLE it is important to measure not only disease activity and damage but also the impact of the disease on their health related quality of life (HRQoL). Disease-specific HRQoL measures are considered to be more relevant and sensitive to change. As none were currently available, this present work was conducted to develop and validate a patient-derived measure, the Lupus Quality of Life (LupusQoL) Questionnaire and to use it to describe HRQoL in a group of patients. Several stages of development led to the validation of the questionnaire. The generation of items was informed by: existing HRQoL literature; other FIRQoL measures; consultation with the rheumatology multi-disciplinary team; and patient interviews (n=30). From this, a measure comprising 67 items was generated. Twenty patients completed this initial version providing critical feedback regarding face validity and structure, content of the items and response scales, leading to further revision of the LupusQoL. This revised version of the LupusQoL (63 items) was completed by 322 patients. Principal components analysis and Cronbach alpha coefficients highlighted eight domains. The LupusQoL was further revised (42 items) based on factor analysis, clinical decision and patient feedback. Principal components analysis was performed on the data from the second version of the LupusQoL, completed by 213 patients. This confirmed the factor structure of the LupusQoL. The final measure contains 34 items comprising eight domains: physical functioning, pain, emotional functioning, fatigue, body image, intimate relationships, planning and burden to others. Cronbach alpha coefficients (all values > 0.8) and item to domain correlations showed good internal consistency of the subscales. Test-retest reliability and concurrent validity have also shown that the instrument is robust. For all domains except fatigue those with no current activity and/or only mild activity in any systems reported a better HRQoL than (a) those with moderate activity in any systems and (b) those with severe active disease in any systems (p'c0.05). Patients with no damage reported a better HRQoL than those with damage for physical health, pain, planning, intimate relationships and burden to others (p < O.O5). The LupusQoL is a valid and reliable lupus-specific HRQoL measure for adults with SLE.

Transient ischaemic attack (TIA) is a condition which is typified by stroke symptoms that resolve quickly and completely. It could be expected that patients’ needs following TIA would be limited to secondary stroke prevention strategies. However, in clinical practice, it has been observed that people appear to have many unexpected needs following TIA. The overall aim of this research is to answer the question ‘What are people’s needs following TIA?’ This was achieved by the development of a comprehensive list of potential needs and a model that describes commonly reported needs and how needs change over time. The methodology of this research was pragmatic, using mixed methods within seven inter-linked studies over three distinct phases. A needs assessment framework guided the research and an initial literature search revealed no previous needs assessment following TIA. There has since been limited research looking onto the experience of TIA. Phase 1 used survey methods to explore TIA service provision at a national level to provide context for the subsequent studies. This comprised an email survey of British Association of Stroke Physicians’ members asking about their services. A total of 73 responses were received from 59 of a possible 213 acute secondary care TIA services (some services provided more than one response). There was variability in access, content and personnel involved in TIA services across the United Kingdom. 97% were run by stroke specialist staff. Only 41% of sites offered routine follow-up, 29% offered investigations and results during first clinic attendance. 29% offered a seven-day service. Only 2 sites (3%) met all four of the above ‘best practice’ criteria devised for this study. Phase 2 used an existing needs mapping for stroke as a starting point, on the basis that TIA and stroke are part of the same continuum of cerebrovascular disease. Patients were interviewed (n=11), or participated in focus groups (n=10). Health care staff were asked to complete a questionnaire based on the stroke needs mapping (n=96) or were interviewed (n=11). Carers of people who had a TIA, were also asked to complete a questionnaire (n=6). The findings from Phase 2 demonstrated that although many needs previously identified post-stroke are relevant, there are others that appear unique following a TIA diagnosis. There were also mis-matches between staff and carers’ views as compared to the views of patients, suggesting that efforts might be made to meet needs not actually felt by patients. Phase 2 showed that common needs were likely to be identified and addressed, but less common needs might be overlooked and therefore remain unmet. The findings of Phase 2 were combined to develop a draft model of needs following TIA. Phase 3 aimed to validate the draft model of needs using an expert panel focus group comprising professionals (n=4), patients (n=3) and carers (n=1). The expert panel refined the draft model. Four time-points were identified over which needs changed. These time-points were defined as; onset of symptoms, diagnosis, early (0-28 days), and later (29 days or more). The research showed the mis-matches between staff and patients’ views of needs following TIA highlight common misconceptions on the part of healthcare professionals. The production of a comprehensive list of potential needs will help professionals to be more open to unexpected, or less obvious needs. The model of needs could be used when planning future services, to ensure needs are identified and where possible met. There were several needs identified following TIA that are not found in the stroke needs mapping, in particular, around recognition of the event and diagnosis of the condition. The needs assessment framework used to structure the research has not previously been used in a healthcare setting, but it provided an excellent road-map through the needs assessment process. Lee’s framework has previously been used in education but was selected for its compatibility with mixed methods and the focus on the individual rather than using a framework with a more bio-medical slant. This is the first research to comprehensively explore needs and problems experienced following TIA, rather than reporting specific issues or parts of the TIA experience. TIA is not the benign condition which it was historically thought to be. A range of problems and needs can result from a TIA, some not previously identified in relation to TIA, such as hypervigilance and concern regarding diagnostic uncertainty.

This study evaluates the use of the Roper, Logan and Tierney model in an orthopaedic setting using a practitioner research approach. The aims of the study are to explore how the model influences the patients' needs, what staff are doing when giving care and how they plan and evaluate care. A qualitative phenomenological methodology was used, with inductive code development. Thirty-six patients participated in the study. The data was gathered by observing twelve patients, interviewing another twelve patients and analysing twelve care plans. Initial analysis was carried out by using the twelve activities of living as a framework to code the accumulated textual data. Comparison of this indicated where the model and practice differed. Exploratory diagramming was used in the analysis, resulting in the creation of frequency hierarchies. These were used to analyse the codes. They were presented in three areas, the data as a whole, the staff and patients' perspective and the long and short stay patients. The results support four themes emerging from the data, a hierarchical element exists in care, a common core of needs is found between the long and short stay patients, patients and staff perceive care differently and the identification of partnership as a key theme for effective care. The partnership theme has been explored by developing further themes from the data. The formation of partnerships between patients and staff are shown to be important in negotiating care. Frequency hierarchies in this study are found to be a powerful method of identifying themes, and an excellent tool for the exploration of qualitative data. The unique role of the research practitioner is also discussed and recognized as a valuable perspective for the critical evaluation of nursing models.

The nature of quality of life and its consensual definition has eluded researchers and philosophers ever since Aristotle. While social indicators researchers seek to model it in order to inform policy, it is used as an outcome measure of health care. Although studied from a variety of perspectives, the concept has, as yet, been largely untouched by postmodernists. In this thesis, quality of life is studied through the frame of long¬term conditions. Within this, I use the Deleuzo-Guattarian concepts of the body without organs, its territorialisation by societal forces and the emancipatory promise of nomadism. Three health service developments for people with multiple sclerosis, a sample of television programming, a Disney Classic feature and the National Service Framework for long-term conditions form the case material for the study. I take the reader through a deterritorialising textual journey, so that quality of life may be approached differently. Qualitative research chapters are alternated with those analysing the political and cultural background to their making. These texts are woven into a deconstruction of quality of life in the five oppositional pairs of life and death, health and illness, independence and dependence, empowerment and disempowerment and certainty and uncertainty. This deconstructive thread informs and is informed by the texts studied, in a (rhizomatic) dis-order used to blur boundaries between established categories. A temporary reterritorialisation of quality of life emerges, which highlights the construction of the self as an endless process. Powerful discourses, such as medicine, shape a quality of life text for people with long-term conditions. Deterritorialisation, as a process, enables the acknowledgement of such territorialising forces and encourages a different engagement with life. The body as a dys-organ-ised entity with erratically evolving possibilities becomes a territory, and quality of life the potential to engage in a liberating process of deterritorialisation.

Despite a widely accepted view of the importance of understanding experience from the point of view of the individual using services in modern western society, there are relatively few studies that have explored day-to-day living in a care home from the older person's perspective. This study aimed to present the voice of the untold stories of care home residents through an interpretative study that was informed by a biographical approach and narrative method. Eight older people who lived in four different care homes in England participated in a sequence of up to eight narrative interviews over a six month period. Through the process of listening to, retelling and interpreting the residents' stories the resident world was explored. There were three stages to the interpretative process that focused on:- developing a naïve or surface understanding to acquire a sense of the whole sequence of a participant's interviews; a structural analysis that examined the interviews to investigate what the text said and how it was said; and a critical in-depth examination of the interpretation within the wider social context. The interpretation revealed the unique way that each participant lived in a care home. These older people worked hard to reconstruct their life following the move to a care home and as they lived there. Though the residents were limited by physical, functional and cognitive problems, they developed strategies with the aim of influencing the life that they lived within a care home. Where they were able to implement those strategies they reconstructed their life in ways whereby they 'lived with care.' In this sense they were active biographical agents shaping this phase of their life. This is an alternative biography, to that of older people 'existing in care' as an outcome of care received. This thesis provides new insights into the residents' world. The overriding conclusion that can be drawn from these stories is that these older people were trying to live as active biographical agents who were instrumental in shaping their own life. They were able to do this to a greater or lesser extent and the conceptual model of biographical living that has been developed from the resident stories provides a framework to depict the complex interactions that shape an individual's experience in this environment. An inherent feature of this model is recognition that residents can be active agents throughout their lives in care homes. In summary, residents' desire to 'live with care' and this is not only possible, it is achievable.

Over the period of the last century in the United Kingdom mental health nursing roles have evolved and adapted in response to changes in mental health related policy and associated changes in the ethos, structure and delivery of mental health services. The conceptual framework informing this thesis drew upon the theoretical perspective of symbolic interactionism underpinning a qualitative, grounded theory approach augmented with the use of situational analysis to explore the processes involved in the development and maintenance of professional role congruity. 'Role congruity' is defined as a functional balance between aspects of role adequacy, role legitimacy and role support. Nine student and ten registered mental health nurses were depth interviewed between 2012 and 2016. Analysis of data was conducted using grounded theory data analysis approaches, with the research context incorporated into analysis using the mapping processes of situational analysis. This analysis yielded the formulation of a grounded theory model entitled 'Establishing Role Congruity', capturing the processes involved in developing and maintaining professional role congruity for this group of mental health nurses. Situational analysis enriched this model by contextualising the captured processes within 'social worlds' and discourses evident within the mental health practice arena. On the basis of this analysis, a conceptual model of 'Role Congruity Alignment' is proposed together with recommendations for contemporary and future mental health nursing roles with regard to the balance between 'generic/eclectic' functions and roles specialising in terms of service user groups and/or therapeutic interventions. Attendant implications for the initial education and subsequent continuing professional development of mental health nurses are summarised.