Patient monitoring is a complex task, particularly during childbirth, where assessment of the baby's condition is inferred from the continuous electronic recording of the baby's heart rate pattern and maternal uterine contractions (CTG). Computerised decision support has long been advocated, as difficulties in the interpretation of the CTG have led to failure to intervene and unnecessary intervention. The problem is large, for obstetric litigation now accounts for 80% of the UK National Health Service litigation bill. The Plymouth Perinatal Research Group has developed a computerised decision support system for patient monitoring during childbirth and the UK Medical Research Council has agreed to fund a multicentre randomised trial. The work of this thesis was an investigation of the labour ward care system to inform the human-centred design of the decision support system for patient monitoring in childbirth, prior to the clinical trial. It was recognised that many decision support systems have failed to gain clinical acceptance, as conventional design models were inadequate. Lack of attention to the organisational context of the care system and the process of the direct patient care led to the design of inflexible 'expert' systems, which constrained working practices. A pilot ethnographic study of an existing decision support system, used for the analysis of umbilical cord blood samples, was undertaken to clarify the research approach required for the main study. It was found that barriers to effective use within the wider work system included inadequate implementation and lack of organisational support. A case study approach produced a more comprehensive account of the context and process of the use of the computer system. The main study combined qualitative with quantitative techniques to investigate the system of care in childbirth, both outside and within the delivery room, to provide a unique, holistic perspective. The organisational context of the labour ward was investigated by direct observation of clinicians over the course of their work for 220 hours. Observations were documented and transcribed to computer text files. Patterns of actions and events were coded using ATLAS(ti) data analysis software. The codes were counted and tabulated to model the main features of this labour ward care system, which was expressed in the form of a rich picture diagram. These findings were confirmed by a limited study of five other UK labour wards. The core qualitative categories, derived from the observation data, found a complex and problematic relationship between communication, decision making and accountability. Decisions were often made outside the delivery room and were subject to misinterpretation and bias. The organisational hierarchy made it difficult for junior staff to question clinical management decisions. A system of tacit practice, external demands upon clinicians and transient allocation of junior midwives to labour ward militated against teamwork. This increased the vulnerability of the care of mothers to error. The process of direct patient care, within the individual delivery room, of 20 mothers in labour was captured in a novel audio-video observation study. The 111 hours of first stage labour and 12 hours of second stage labour were recorded and digitised to computer files. Recurrent actions and patterns of behaviour were coded both quantitatively and qualitatively using ATLAS(ti) data analysis software. Midwives left the room on average every 15 minutes to be absent for 27% of the first stage of labour. Record keeping occurred on average every 10 minutes and accounted for 19% of midwives' time. Midwives had little time to talk with mothers and only sat down at the bedside for 15% of the time. Psychosocial support was not given priority. Parents were generally excluded from communication between clinicians yet 108 clinicians took part in the care of the 20 women. Pressures from medicolegal directives and task-orientated imperatives overshadowed meaningful interaction with parents and caused spurious care priorities. This work has revealed the need for a critical reassessment of the type of support that is required for monitoring situations in all areas of medicine. A range of functions, such as shared information displays and models, have been suggested to augment roles and relationships between clinicians and parents to support patient-centred care. The present work has revealed that a combination of computer-based technology and changes to working practice can support the parents, their individual carers and their various roles. In this way the system of care can be more aligned to the objective of a safe and emotionally satisfying birth experience for parents and staff. A further programme of research is required to follow-up the existing studies, develop these new forms of interaction between technology and clinicians, and evaluate their effectiveness. The research methods employed in the present work will provide a more comprehensive evaluation of the decision support system in the forthcoming multicentre trial. The methods of investigation have also been shown to be of relevance to patient safety research, service delivery and training.

yes / Focus on patient experience and patient centred approaches within healthcare has substantially increased since the Picker Institute (a not for profit organisation) was established in the 1980′s [ [15] ]. The Picker Institute's vision for ‘the highest quality person centred care for all, always’ outlines eight principles of person-centred care which health care providers should strive for [ [15] ]: (1) Fast access to reliable healthcare advice [15]. (2) Effective treatment delivered by trusted professionals [15]. (3) Continuity of care and smooth transitions. [15] (4) Involvement and support for family and carers [15]. (5) Clear information, communication and support for self-care [15]. (6) Involvement in decisions and respect for preferences [15]. (7) Emotional support, empathy and respect [15]. (8) Attention to physical and environmental needs [15].

Patient-centred care positions patients as active participants, collaborators, and experts in their healthcare and healthcare relationships - a role that adults with High Functioning Autism Spectrum Disorder (HFASD) may find challenging. The purpose of this study was to better understand the perspective and experiences of adults with HFASD in healthcare and healthcare relationships. Twenty-eight North American adults with HFASD responded to four open-ended long-answer questions online, which were analyzed using constant comparison methods within the grounded theory framework. Participants’ positive and negative experiences in healthcare were determined by their interactions with healthcare professionals who were portrayed as knowledgeable and empowering allies, or unknowledgeable and overpowering adversaries. Ultimately, these findings highlight the need for more education and knowledge about HFASD among healthcare professionals, and how it impacts these adults, as well as the need to develop evidence based interventions and tools to support adults with HFASD communication in healthcare. / October 2016

The current patient-centred healthcare approach encourages individuals to assume greater roles in decisions about their health. The premise is that patients who are well informed about healthcare options are more likely to adhere to prescribed treatments and achieve better health outcomes. This approach assumes that patients have an adequate level of health literacy. While a range of definitions exist, health literacy is commonly defined as an individual’s ability to seek, understand and utilise health information to make appropriate health decisions. / Health literacy is increasingly recognised as a complex multi-dimensional concept which involves interactions between individual abilities and broader environmental factors. However across definitions, there has been little consultation with patients to understand what is important to effectively seek, understand and utilise health information. The lack of a consensual understanding has led to debate as to what health literacy represents and how it should be measured. A range of measures exist with the predominant approach being the testing of individual literacy abilities. However measures do not assess the range of attributes described in definitions. Thus a considerable gap exists between how health literacy is defined and how it is measured. This thesis focused on addressing this gap. The objectives were to: (i) critically appraise existing health literacy measures (ii) develop a conceptual framework from the patient perspective and (iii) use this framework to develop a comprehensive measure of health literacy. / A multi-method qualitative and quantitative approach was used: / (1) Systematic review and appraisal of the content, development and psychometric properties of health literacy measures. / (2) In-depth consultations with patients across healthcare and disease continuums to develop a conceptual framework. / (3) Development of a new health literacy measure based on the conceptual framework using a classical test theory approach. / A critical appraisal of the literature revealed that the majority of health literacy measures are not based on a conceptual framework and none appeared to adequately measure a person’s ability to seek, understand and utilise health information. Content focussed primarily on reading, comprehension and numeracy skills and scoring was poorly defined. Only five of the 19 measures had evidence of acceptable reliability. / The conceptual framework of health literacy from the patient perspective identified 17 key elements: six individual abilities and 11 broader contextual factors that are important to seek, understand and utilise health information and expanded previous conceptualisations of health literacy. This informed the development of the Health Literacy Management Scale (HeLMS) which measures six generic and potentially modifiable abilities and three specific broader social factors. Overall the HeLMS measures an individual’s ability to seek, understand and utilise health information within the healthcare setting. The HeLMS consists of 29 items across eight domains. Rigorous psychometric testing demonstrates that it possesses strong construct validity and high reliability (coefficient α >0.80 for all eight domains). / This research provides unique contributions to the conceptualisation and measurement of health literacy. Limitations in the content and psychometric properties of previously developed measures have been identified through a systematic process. A conceptual framework derived from the patient perspective identifies a range of components that provide new insight into: (i) constructs that should be incorporated to measure health literacy and (ii) areas that need to be addressed to improve health literacy. The development of the HeLMS now allows for a more comprehensive assessment of health literacy. Information from the conceptual framework and the HeLMS are likely to be useful tools to inform the development of public health initiatives to enhance patient participation in the management of their health.

Physical and psychosocial symptoms in advanced chronic obstructive pulmonary disease (COPD) are cumulative and profound; global financial and human costs are huge. COPD in late stages runs an unpredictable downward course of increasing, potentially fatal exacerbations. Nevertheless many physicians avoid advance care planning in this context, a choice that tends to promote last minute crisis decision-making. To explore a more ethically sound proactive approach to end-of-life care decision-making I conducted a qualitative study informed by the question: “What is required for meaningful and effective advance care planning in the context of advanced COPD?” Fifteen participants (eight patients with advanced COPD plus seven intimate others) participated in two in-home advance care planning discussions that incorporated patient-centred care principles. Session transcripts were analyzed using "interpretive description." Despite initial wariness, participants were able to discuss their care-related hopes and preferences and reported that the process was a positive one. Interpretation of the positive feedback suggested participants experienced the process as a chance to: a) talk with an attentive clinician, b) learn, c) consider care-related goals and preferences, and, d) have intimate others hear about these goals/preferences. Interpretation of the process that led to this positive assessment is described in terms of a thematic network. The overarching global theme of this network was "advance care planning as collaborative care," which involved three organizing themes--partnering, negotiating ambiguity, and being a resource--and a cluster of basic themes related to each of these. The "collaborative care" approach is discussed as a guide to advance care planning in advanced COPD. Like other advance care planning models, the study approach included a skilled clinician facilitator, provision of targeted information, and attention to readiness. There were four new elements: focus on caring, engaging hope, facilitator reflective praxis, and contextual sensitivity. While potentially enhancing the "care" dimension in advance care planning, the study approach may incidentally improve resource allocation and satisfaction with outcomes. Done well it may enhance decision-making and care planning, and, just as importantly, be experienced as care itself at a time and by those often neglected in this regard.

Magister Scientiae (Nutrition Management) - MSc(NM) / The provision of quality nutrition care services is needed to address the national burden of diseases, and to reduce under- and overnutrition in South Africa. Globally, there is a lack of information and data about the perceptions, experience of, and satisfaction with the quality of nutrition care services, both from patients and dietitians. Patients and dietitians are in the best position to provide useful information pertaining to their perception and experience of nutrition care service delivery. The aim of this study was to determine the perceptions of patients and dietitians on the quality of nutrition care service delivery in the Klipfontein/Mitchells Plain Sub-Structure (KMPSS).

Background. Around 25-45% of elective total joint arthroplasty (TJA) for primary hip and knee osteoarthritis (OA) are of questionable appropriateness. -- Objective. To examine how appropriateness of elective TJA for hip and knee OA is determined. -- Methods and results. Multi-methods studies guided by the Knowledge-To-Action (KTA) framework and the six Hawker appropriateness criteria for TJA. Study 1 was an interpretive descriptive study exploring barriers and facilitators to using the Hawker appropriateness criteria for adults with knee OA. Nine semi-structured interviews with healthcare professionals and 14 with adults with a TKA revealed: a) 15 barriers (including difficulties in using criteria, lack of accessible conservative treatments, unreceptivity to practice change, clinical judgement limited to OA severity and age, patients receiving information after the decision is made); and b) one facilitator (providing research evidence to obtaining healthcare team buy-in). Study 2 was a systematic review identifying and appraising instruments to assess elective TJA appropriateness for adults with hip and knee OA. None of the 55 instruments met all the Hawker appropriateness criteria; the most included criteria were OA impact on quality of life and evidence of OA while the least included were trial of conservative treatments and elements of shared decision-making. There was limited evidence on psychometric properties. Study 3 was an environmental scan of online Canadian resources for adults with hip or knee OA considering TJA and healthcare professionals participating in the decision. The 73 patient resources were understandable for diverse health literacy levels, but only four were patient decisions aids. Thirteen healthcare professional resources typically recognized OA impact on quality of life, evidence of OA, trial of conservative treatments, and did not discuss elements of shared decision-making. -- Conclusion. When determining appropriateness of elective TJA for primary hip and knee OA, clinical practice and instruments typically focus on OA symptoms negatively impacting quality of life and radiographic evidence of OA, while trial of conservative treatments is less reported. The appropriateness decision-making process poorly acknowledges or supports patient preferences (e.g., shared decision-making). Appropriateness of elective TJA needs to be reconsidered and conceptualized in a way that supports early conservative treatments and patient-centred care.

Yes / Background: The increasing prevalence and associated cost of treating Chronic Obstructive Pulmonary Disease (COPD) is unsustainable, and focus is needed on self-management and prevention of hospital admissions. Telehealth monitoring of patients’ vital signs allows clinicians to prioritise their workload and enables patients to take more responsibility for their health. This paper reports the results of a qualitative study embedded within a feasibility and pilot Randomised Controlled Trial (RCT) of Telehealth-supported care within a community-based COPD supported-discharge service. The aim of the study was to qualitatively explore the experiences of patients with COPD who had received either a Telehealth-supported or a specialist nursing intervention following their discharge from hospital after an admission for a COPD exacerbation. Methods: Patients were invited to either participate in semi-structured interviews or to complete a semi-structured self-administered questionnaire on completion of the intervention. Nine patients were interviewed (67 % female) and seventeen patients completed the questionnaires. In addition, three clinicians responsible for the delivery of both interventions were interviewed to obtain their perspectives on the new services. Results: Seven underlying themes emerged from the patient interviews and were further explored in the questionnaires: (1) patient demographics; (2) information received by the participants; (3) installation of the Telehealth technology; (4) Telehealth service functionality; (5) visits; (6) service withdrawal; and (7) service perceptions. Recipients of both services reported feelings of safety derived from the delivery of an integrated, community-based service. Conclusions: Although recipients of the Telehealth service received 50 % fewer home visits from the clinicians than recipients of a more traditional community-based nursing intervention, the patients were enthusiastic about the service, with some describing it as the best service they had ever received. This suggests that a Telehealth intervention is an acceptable alternative to a more traditional home nursing visit model for monitoring community-based patients with COPD following their discharge from hospital.

Patient-centred care is the gold standard of health care, yet in practice, problems prevail. The use of the ‘expert patient’ in health professional education is one form of learning patient-centred care. A gap in the literature regarding how the use of ‘expert patient’ in health professional education promotes patient-centred care was acknowledged in current research. With Queen’s University Health Sciences & Affiliated Teaching Hospitals Research Ethics Board approval, a sample of Queen’s University MScOT students participated in a qualitative study with the following research question: “How does the students’ experience of interacting with the ‘expert patient' (‘XP’) relate to learning regarding client-centred practice (CCP)?” Three objectives were proposed: 1. Describe the OT students’ experience of interacting with the ‘expert patient’, 2. Describe the students’ learning regarding client-centered practice, 3. Identify the conditions particular to the ‘expert patient’ experience that led to learning regarding client-centered practice. In-depth interviews were conducted with the students subsequent to their ‘expert patient’ experience. Analysis revealed three conditions that together provided the foundation for student experiential learning regarding client-centred practice: interaction with particular persons with stable disability known as ‘expert patients’; students’ requirement to evaluate them and thus ‘experience power’; and explicit opportunities for ‘directed reflection and discussion’. Questions were raised for researchers, health care professional educators and health care professionals regarding the potentially transformative nature of engaging in unfamiliar contexts with openness to learning. The thesis allowed insight into the lived experience of OT students learning with ‘expert patients’; and the admiration, discomfort, humility and gratefulness they experienced while gaining a sense of the meaning of collaboration, respect for autonomy and recognition of expertise. Implications of the research impact all stakeholders in health professional education. / Thesis (Master, Rehabilitation Science) -- Queen's University, 2013-04-15 08:39:19.094

In healthcare encounters, patients communicate wide-ranging concerns relating to their health and illness experience, treatment or wider psychosocial world. This research draws upon a normative understanding of patient centred approaches which recognise the clinical and psychotherapeutic value in having the opportunity to talk to someone who will listen empathetically and to have expressed concerns acknowledged and understood. The aim of this research was to understand how GPs, nurse and pharmacist prescribers manage patients’ emotional cues and concerns in healthcare encounters. This research employed a mixed method study underpinned by an interpretative epistemology to understand, in particular, how nurse and pharmacists as ‘new prescribers’ manage emotionality during consultations in primary care. The study also critically reflected on the value and limitations of the study methodology to explore this topic. Phase one employed a coding framework to code 528 consultations with 20 GPs, 19 nurses and 12 pharmacist prescribers. The nature and content of patients’ cues and concerns and healthcare professionals’ responses were coded and analysed quantitatively. Phase two undertook qualitative analysis on a sub-sample of 30 transcribed recordings to understand barriers and facilitators to offering emotional labour during the consultation process. Phase one found that patients communicate on average 3.4 cues and concerns per consultation and of those concerns expressed, half related to biomedical concerns. Other cue and concern types related to medication, the impact of a patient’s condition/symptoms on their day-to-day life and cues and concerns related to psychosocial issues, including job stress, family problems, or bereavement. Phase one found that there were significant differences between the type of positive/missed responses to patients’ cues and concerns across the groups. 81% of pharmacists’ responses were coded as positive compared with 72% of nurse prescriber responses and 52% of GP responses. Male GPs were significantly more likely to miss patients’ cues and concerns compared to female GPs. Phase two drew upon emotion work theory and models of patient centred care to identify the ways in which emotions are communicated and managed within healthcare encounters recorded for this study. Phase two identified facilitators (such as attuning to the patient’s world, evidence of listening, providing space, validating and legitimising patients’ concerns) and barriers (emotional disengagement, task focused and structured/agenda driven consultations) to the employment of emotional labour. These findings identify that a complex inter-play of individual, socio-cultural and political factors have potential to influence the way in which emotionality is managed during the consultation process. The findings reinforce the importance of patient centred approaches and communication skills training and the need for support, supervision and training to enable healthcare professionals to manage their emotionality and that of their patients.