Understanding What Supports Dementia-Friendly Environments in General Hospital Settings: a Realist Evaluation

Background: Improving care for people living with dementia when they are admitted to hospital is a national priority. Interventions have been designed and implemented to support staff to improve how they provide care to patients with dementia. However, there is limited understanding of how these interventions work in practice and what the outcomes are for patients and their family carers. Objective: To develop, test, and refine a theory-driven explanation of what supports hospital staff to provide dementia-friendly care and with what outcomes for people living with dementia and their carers. Method: A two-phase study design employing realist methodology. Phase one was a realist review which combined evidence from stakeholder interviews and literature searches. Phase two used realist evaluation to analyse data collected from two NHS Hospital Trusts in the East of England to test the theory developed in phase one. Findings: Initial scoping in the realist review identified three candidate theories which structured the literature searches and analysis. Six related context-mechanism-outcome configurations were identified and collectively made the initial programme theory. The review found that single strategies, such as dementia awareness training, would not on their own change how staff provide care for patients with dementia. An important context was for staff to understand behaviour as a form of communication. Organisational endorsement for dementia care and clarity in staff roles was important for staff to recognise dementia care as a legitimate part of their work. The realist evaluation refined the programme theory. While the study sites had applied resources for patients with dementia differently, there were crosscutting themes which demonstrated how key mechanisms and contexts influenced staff actions and patient outcomes. When staff were allocated time to spend with patients and drew on their knowledge of the patient with dementia and dementia care skills, staff could provide care in ways that reassured patients and recognised their personhood. However, accepted organisational and social norms for care practices influenced whether staff considered providing skilled dementia care was an important contribution to the work on the ward. This impacted on how staff prioritised their work, which influenced whether they recognised and addressed patient needs such as pain or hunger, made attempts to reduce distress, and if patients and carers considered they were listened to. Organisational focuses, such as risk management, influenced how patient need was defined and how staffing resources were allocated. Staff commitment to continuing in dementia care was influenced by whether or not they valued dementia care as skilled work. Discussion: Single strategies, such as the use of dementia awareness training, will not on their own improve the outcomes for patients with dementia when they are admitted to hospitals. In addition, attention needs to be paid to the role of senior managers and their knowledge of dementia to support staff to provide care in ways that recognise the needs of the person. The way dementia care is valued within an organisation has implications for how resources are organised and how staff consider their role in providing dementia care. Evidence from observations demonstrated that when staff are supported to provide good dementia care, patients experienced positive outcomes in terms of their needs being addressed and reducing distress. Dementia care needs to be recognised as skilled work by the staff and the organisation.

School-based abuse prevention for children with communicative and/or cognitive disabilities : guidelines for program implementation

Children with communicative and/or cognitive disabilities are at high risk of experiencing abuse, which can have life-long effects on their health and well-being. Primary abuse prevention programs, pitched at school-level with the aim of stopping abuse perpetrated by adults against children before it occurs, have been found to be effective in increasing children’s knowledge of abuse and safety skills. This can decrease their risk of being abused significantly. Such programs have, however, been designed for typically developed children, with a paucity of evidence-based guidelines on how teachers, with the support of principals, could adapt these programs to address the needs of children with communicative and/or cognitive disabilities. Therefore, the purpose of this study is to explore the key components, teaching methods and information that should be included in school-based abuse prevention programs and to subsequently develop and evaluate guidelines for teachers, supported by principals, to guide them in adapting school-based abuse prevention programs for 7–12-year-old children with communicative and/or cognitive disabilities. This was achieved through a three-phase exploratory sequential mixed methods research design. Phase 1 (i.e., the development phase) included three different data sources, published as independent studies. The first data source consisted of a scoping review of school-based abuse prevention programs for 7–12-year-old children that included more than one type of abuse (i.e., both physical and sexual abuse) and was taught by teachers in a school setting. The review explored key components, outcome measures and evaluation methods of such programs. The second data source included focus groups with teachers (n = 7) and practitioners (n = 5) as well as semi-structured interviews with parents of children with communicative and/or cognitive disabilities (n = 6). This data source also focused on identifying key components and teaching methods, specifically for children with communicative and/or cognitive disabilities. The third data source entailed a rapid review of the extant literature regarding potential signs of abuse in children with disabilities followed by the social validation of these signs by an international expert panel (n = 39). Despite some differences in the perceived accuracy of the signs, post-traumatic stress disorder (PTSD) was rated as the most accurate. Phase 2 of the study (i.e., the development phase) included the development of guidelines for adaptations of school-based abuse prevention programs for the target population by integrating Phase 1’s data using a recursive abstractive thematic analysis approach. The theoretical and conceptual frameworks of the thesis underpinned the guideline development process and highlighted the need for a multi-systemic approach to abuse prevention. The resulting guidelines included recommendations for how teachers, with the support of principals, could conduct adaptations of school-based abuse prevention programs to suit the needs of 7–12-year-old children with communicative and/or cognitive disabilities. Finally, Phase 3 (i.e., the evaluation phase) explored the feasibility and social validity of the guidelines developed in Phase 2 by conducting an online survey and email interviews with three stakeholder groups, namely teachers (n = 6), principals (n = 3) and content experts (n = 10). The results demonstrated that the participants perceived the guidelines as feasible and socially valid and of an overall high quality and importance for children with communicative and/or cognitive disabilities. The overall quality of the guidelines was highly rated by the participants (5.67 out of 7). Some of the participants raised a few concerns regarding the design and structure of the guidelines and also alluded to a lack of resources as well as the need for additional time and funding to implement such a program. All the participants, however, agreed that they would recommend the guidelines for use.Thesis (PhD (Augmentative and Alternative Communication))--University of Pretoria, 2021.Centre for Augmentative and Alternative Communication (CAAC)PhD (Augmentative and Alternative Communication)Unrestricte

Exploring the delays to diagnosis of endometriosis in the United Kingdom: a qualitative study

In the United Kingdom, the average time to diagnosis of endometriosis, a common gynaecological condition, is 7.5 years. The aim of this qualitative doctoral study was to explore, in two phases, the reasons for the delay to diagnosis of endometriosis from the perspectives of both patients and healthcare professionals. In phase 1, fifteen women with confirmed endometriosis participated in individual, semi-structured interviews, and a conceptual description was generated using constructivist grounded theory. Further analysis resulted in a novel, substantive theory; this describes how the main concern of women with undiagnosed endometriosis is coping with a fracturing life, which they address through a process of making sense. The way in which a woman seeks to make sense depends upon the context of refusal, disbelief or belief arising from her interactions with others. Across each context, the grounded theory identifies how women’s individual experiences influence health-seeking behaviours and the subsequent delays to diagnosis. The findings from phase 1 informed the design of phase 2, where focus groups with fifteen healthcare professionals were conducted to explore delays to diagnosis of endometriosis. The data were analysed using reflexive thematic analysis. Three main themes evolved: (1) endometriosis is peppered with discrimination, (2) invisible women and the invisible line for referral, and (3) visibility in a context of belief: rendering the woman visible. A key finding that connected both phases was the way in which clinicians rendered women invisible and how women recognised and responded to this. This study provides a unique understanding of the health-seeking behaviours of women with undiagnosed endometriosis and develops a multivariate theory to explain the delays to diagnosis. This original contribution can be used to alleviate structural discrimination and encourage collaboration within and among professional bodies and patient groups to facilitate referral and diagnosis

Oldest-old partner’s experiences of providing end-of-life care: a narrative study

Background Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Governments have responded by promoting end-of-life in the community. Partly as a consequence, older partners are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. Little is known about people aged 75 and over who are providing end-of-life care. In order to prepare our health and social care systems for rapidly ageing populations, we need to understand more about this group’s experiences of end-of-life care. Aim To explore the experiences of oldest-old partners looking after their partner approaching end-of-life care. Method First, I conducted a systematic review of the extant literature published since 1985 on the topic. Second, I conducted a longitudinal narrative interview study with 17 couples (19 participants in total). Findings A systematic review of the literature identified a small and only medium quality evidence-base with important empirical and theoretical gaps that require further research. Drawing on interview data, the first key finding was that older partners navigated the carer identity in relation to external and internal factors with not all subsequently embracing the carer identity for themselves. A second key finding is that older partners are actively engaged in integrating care in their capacity as home- keepers, networkers and vigilant visitors. A third key finding highlights the creative ways in which older partners engaged with a pill organizer called a dosette box to make their daily end-of-life caring and medical management bearable. Conclusions The overarching contributions of this thesis challenge notions of the fourth age as merely comprising “decline, passivity and frailty” by emphasizing the activity and creativity of older partners providing end-of-life care. Second, by thinking about oldest-old partners needs and experiences as interconnected, I suggest that policy-makers and health and social care providers will be able to more effectively design services that meet the needs of both oldest-old partners.Woolf Fisher Doctoral Scholarshi

Living with Severe Asthma: A Self-Determination Theory Perspective

Severe asthma affects around 3-10% of the asthma population. Whilst most severe asthma research has been devoted to understanding pathophysiology, biomarkers and testing novel treatments, there is a dearth of research focusing on patients’ experiences of self-management of severe asthma. To improve health outcomes for patients with severe asthma, treatment guidelines emphasise the importance of patient-centredness, shared decision making and self-management. Research has demonstrated that understanding people’s attitudes, beliefs and values can impact behaviours and health outcomes. Greater attention is needed to understand the patients’ experiences and perspective of living with this condition, which may shape opportunities for directing patient-centred health interventions. Self-determination theory represents a broad framework to explain health related behaviours and motivation on an individual level. According to this theory, people have three basic psychological needs: autonomy, competence and relatedness. Drawing on these constructs a qualitative research design was used to investigate lived experiences and behaviours from the perspective of people living with severe asthma. Collectively, the findings provide new understandings of the lived experience of severe asthma and show the current biomedical approach to supporting patients is disconnected from the experiences narrated by participants

Talent research from a social science perspective. Theoretical, methodological, and empirical deliberations

The extraordinary achievements of athletes, musicians, scientists, artists and the like have attracted the attention of researchers from a number of different scientific disciplines such as psychology, medicine, or physiology. Most empirical talent development research primarily fo-cuses on how singular factors contribute to the development of high-achievement. However, from a social science perspective, talent development is embedded within a specific social con-text that provides norms and ideas on talent-related characteristics, normative (talent) devel-opmental pathways, and behavioral expectations for those considered talented. The individual considered talented cannot be reduced solely to talent-related characteristics; instead, he or she enters an achievement domain with his or her own unique history that also shapes how ‘inputs’ from the environment are processed and given meaning. Thus, the main research interest within this dissertation focuses on how an individual with his or her unique history can be made fit to the structural peculiarities of the respective achievement context or how the context can be made fit to the individual. To address this question, I offer theoretical, methodological, and empirical deliberations from a social science perspective that takes ‘the personal’, ‘the social’, and their complex interactions over the talent development pathways into account. Seven research papers build the basis of these reflections, with three theoretically oriented papers, three methodologically oriented papers, and one empirical paper. Concluding from the theoretical deliberations, talent can be considered as a social construction; within talent development processes, a person with his or her unique history is made fit to the performance expectations of the respective organization or vice versa. Methodologically, ap-proaches that are sensitive to personal and social factors and their interaction along the devel-opmental pathway are required. In this regard, qualitative research can provide in-depth in-sights into individuals’ perspectives and experiences, which would also allow to move away from a one-size-fits-all-approach to talent development to more individualized talent develop-ment strategies. Empirically, the findings demonstrate that developmental trajectories of high-achievers are highly individualized. However, despite different structural characteristics of the respective achievement domains, we can identify cross-domain narratives of talent and its de-velopment. From an applied perspective, the findings call for talent management strategies that are biopsychosocially individualized. Rather than limiting talent promotion efforts to singular fac-tors, it is necessary to consider the whole person with his or her unique history and the broader sociocultural context into which talent development is embedded

Accessibility of Health Data Representations for Older Adults: Challenges and Opportunities for Design

Health data of consumer off-the-shelf wearable devices is often conveyed to users through visual data representations and analyses. However, this is not always accessible to people with disabilities or older people due to low vision, cognitive impairments or literacy issues. Due to trade-offs between aesthetics predominance or information overload, real-time user feedback may not be conveyed easily from sensor devices through visual cues like graphs and texts. These difficulties may hinder critical data understanding. Additional auditory and tactile feedback can also provide immediate and accessible cues from these wearable devices, but it is necessary to understand existing data representation limitations initially. To avoid higher cognitive and visual overload, auditory and haptic cues can be designed to complement, replace or reinforce visual cues. In this paper, we outline the challenges in existing data representation and the necessary evidence to enhance the accessibility of health information from personal sensing devices used to monitor health parameters such as blood pressure, sleep, activity, heart rate and more. By creating innovative and inclusive user feedback, users will likely want to engage and interact with new devices and their own data

Using significant event analysis and individual audit and feedback to develop strategies to improve recognition and referral of lung and colorectal cancer at an individual general practice level

Introduction: The lifetime risk of developing cancer is 50%. Whilst cancer survival rates are increasing, data suggests UK survival is lower than comparable countries. There is a growing evidence base to suggest cancer survival is linked at least in part, to the early recognition and referral of symptoms in primary care. The role of primary care is vital with 85% of cancers diagnosed following presentation to primary care. Significant event analyses (SEAs) are an effective tool to learn detailed lessons about the primary care interval and SEA research completed so far highlights the importance of safety netting.Method: The research within the thesis was informed by two theories of behaviour change, the Behaviour Change Wheel and Normalisation Process Theory. The methods were split in to three distinct sections. Firstly, a scoping review of safety netting was undertaken. Secondly, the recognition and referral of lung and colorectal cancer symptoms in primary care was investigated using SEAs. Finally, the SEA data generated was used in an audit and feedback intervention to develop a series of action plans.Findings: The definition and content of safety netting was developed. SEAs demonstrated the importance of safety netting in improving the primary care interval, but also highlighted the role of investigations, patient factors and comorbidities. SEA data was used to develop interventions which were accepted by primary care staff. Result synthesis showed the importance of safety netting and led to the development of a model.Discussion: The importance of safety netting has been highlighted throughout the thesis. Further research is needed to evaluate the model developed. Opportunities for improving the primary care interval were highlighted. Developing interventions through audit and feedback with SEAs is feasible, and is accepted by primary care staff. The thesis has left multiple unanswered questions and could pave the way for a larger, more robust study based on the methods and techniques demonstrated

Living with and beyond breast cancer : exploring women’s use of social media to support psychosocial health

Background: Despite the extensive use of social media, its role in supporting women living with and beyond breast cancer (LwBBC), across the survivorship trajectory, remains underexplored. Existing research has tended to focus on single or dual platform use and utilised secondary data, principally from Facebook and Twitter. In contrast, this study sought to ensure women’s experiences of use took centre stage by adopting a qualitative approach to explore social media use across the survivorship trajectory. Aims: The aims of this thesis were to: a) explore how women LwBBC use social media; b) examine how women use social media as communicative resources in relation to LwBBC; and c) make sense of how women use social media to support their psychosocial health. Methods: Twenty-one women (age range 27-64) participated in semi-structured interviews. Twelve participated in a photo-elicitation study using pre-existing photographs to explore social support. Nine participated in a photo-production study in which they took photographs (n=157) to represent how they communicate their experiences of LwBBC to others. A bricolaged approach to data analysis using thematic, polytextual and voice centred methodological approaches ensured women’s voices were brought to the fore within the analysis process. Findings: Social media use is integral to many, but not all, women’s daily lives and considered by women an appropriate space to explore their own experiences. Women describe using multiple social media platforms, such as Facebook, YouTube, Wikipedia and WhatsApp concurrently. The use of multiple platforms simultaneously to satisfy psychosocial needs demonstrates use to be more fluid and dynamic than the current literature suggests. Through listening to women’s voices, and using photographs to visualise voices, three key themes came to the fore: (i) finding relevant, timely and appropriate support; (ii) navigating disrupted identities; and (iii) (re)gaining a sense of control. Analysis shows these themes to be entangled, interconnected, and dynamic with women’s use shifting across time. Women describe social media use as both empowering but also as dislocating. Conclusions: This is the first in depth qualitative study that takes an overview of women’s engagement across social media platforms to support their experiences of LwBBC. It demonstrates significant digital labour by women through use of social media to support their physical, emotional, and (anti) social experiences of LwBBC. It indicates naturally occurring networked communities as important contributors to the ongoing psychosocial support women need at different stages of LwBBC. Social media enables women to (re) gain a sense of control and can reduce need to draw on health service provision. Knowledge of women’s use can provide insight and guidance for healthcare professionals (HCPs), producers of online content, moderators of social media communities and other women LwBBC