Yes / Background: Individuals with type 2 diabetes play a pivotal role in their health. Enhancing the self-management of diabetes can improve blood glucose control, and quality of life, and reduce diabetes-related complications. We have identified factors influencing the self-management of type 2 diabetes to inform strategies that may be applied in the long-term management of blood glucose control. Methods: We conducted a systematic literature review of recent studies published between January 2010 to December 2020 to identify the available evidence on effective self-management strategies for type 2 diabetes. The databases used for the searchers were Scopus, PubMed, Science Direct, CINAHL, and Google Scholar. We assessed English language publications only. The screening of titles was duplicated by two researchers. We then conducted a thematic analysis of the key findings from eligible publications to identify reoccurring messages that may augment or abate self-management strategies. Results: We identified 49 relevant publications involving 90,857 participants. Four key themes were identified from these publications: Individual drive, social capital, Knowledge base, and Insufficient health care. High motivation and self-efficacy enabled greater self-management. The importance of family, friends, and the health care professional was salient, as were the negative effects of stigma and labelling. Enablers to good self-management were the level of support provided and its affordability. Finally, the accessibility and adequacy of the health care services emerged as fundamental to permit diabetes self-management. Conclusions: Self-management of type 2 diabetes is an essential strategy given its global presence and impact, and the current resource constraints in health care. Individuals with type 2 diabetes should be empowered and supported to self-manage. This includes awareness raising on their role in self-health, engaging broader support networks, and the pivotal role of health care professionals to inform and support. Further research is needed into the capacity assessment of healthcare systems in diabetes medicine, targeted low-cost resources for self-management, and the financial requirements that enable self-management advice to be enacted. / While this research did not receive any specific project funding, KRB is funded by a University of Otago Pacific Ph.D. Scholarship. ANR is funded as a Research Fellow by the National Heart Foundation.

This thesis explores the role of the nurse on an Acute Medical Admissions Unit (AMAU). AMAUs provide a dedicated area for the assessment, treatment, and subsequent transfer or discharge of patients who are medical emergencies. Despite increasing numbers of AMAUs across the UK they are an under researched area and, in particular, there is limited research that has explored the role of the nurse in the AMAU setting. Data were generated through the use of ethnography that entailed participant observation over an eighteen-month period, semi-structured interviews with a purposive sample of doctors, nurses, paramedics, and patients (n= 19), and examination of documentary evidence. Drawing on the concept of communities of practice (Wenger 1998) and the demand-control-social support model of occupational stress (Baker et al., 1996) the key themes of the study were identified as: The AMAU nurse's role in co-ordinating patients ' transition; Professional skills and attributes o f the AMAU nurse; 7 love the buzz': the AMAU nurses' work place stresses and balances; and Organisational constraints and practice boundaries for AMA U nursing The findings from the study indicate that a key aspect of the AMAU nurse's role was the facilitation of rapid patient transition. In addition the study has identified the distinctive and locally negotiated working practices developed by the nurses to coordinate this transition. Another important claim arising from this study was the identification of this nursing role as an evolved construction within a community of practice. This study makes a significant contribution to the limited body of knowledge regarding AMAU nursing practice by aiding understanding of the complexity of this nursing role. Additionally, the application of the concept of community of practice provides a unique perspective and insight into this under explored role. Recommendations are offered for practice, education, management and future research.

Person with hearing impairment (PHI) and their Communication partners (CPs) have a range of experiences and milestones before, during and after their audiological assessment and/or rehabilitation sessions. The term ‘patient journey’ refers to understanding the experiences and the processes the patient goes through during the course of the disease and the treatment regime. The aims of the current thesis were: (1) to further develop patient journey models of individuals with gradual-onset hearing impairment and CPs by taking their views into consideration; (2) to develop the patient journey model for PHI of sudden-onset; (3) to develop a self-reported measure of hearing disability acceptance and to study its construct and concurrent validity; (4) to investigate the health behaviour change characteristics of people noticing hearing difficulties using the stages-of-change model.  Papers I (n=32) and III (n=9) were aimed at further developing the journey model of PHI and their CPs proposed by the Ida Institute. Both studies employed qualitative methods (i.e., focus groups and interviews for data collection and thematic analysis for data analysis), and defined the models based on the perspectives of PHI and CPs both of which had seven main phases. These data were compared with the professionals’ perspectives of the journey as reported in the Ida Institute model which had six main phases. Our studies highlight new phases (i.e., self-evaluation in PHI journey and adaptation in CP journey) and also various commonalities and differences in the perspectives expressed by professionals and patients. Paper II included a pilot study to explore the patient journey of sudden-onset acquired hearing impairment from both professionals (n=16) and patients (n=4) perspectives. Both identified all the six main phases, which include: awareness; movement; diagnostics; rehabilitation; self-evaluation; and resolution. The pre-awareness phase may hinder the realisation of hearing loss in persons with gradual onset hearing loss, whereas it is far more straightforward in persons with sudden-onset due to its nature of onset. Papers IV and V employed a cross-sectional design (n=90). Paper IV was aimed at developing a Hearing Disability Acceptance Questionnaire (HDAQ), and to study its construct and concurrent validity. Results suggested that the HDAQ has a two factor structure which explains 75.7% of the variance and had good internal consistency (Cronbach’s alpha of 0.86). Also, the scale had good concurrent validity in relation to self-reported hearing disability, self-reported anxiety and depression and readiness to change measures. Paper V was aimed at understanding the stages-of-change in adults with hearing disability using the University of Rhode Island Change Assessment Scale.  As predicted a high percentage of participants (over 90%) were in the contemplation and preparation stages, supporting the stages-of-change model. Overall, the papers presented in this thesis may contribute to a better understanding of process of change through hearing impairment in PHI and their CPs. / Personer med hörselnedsättning (eng. PHI) och deras kommunikationspartners (eng. CPs) har en uppsättning upplevelser och erfarenheter före, under och efter audiologisk bedömning och/eller hörselrehabilitering. Begreppet "patientprocess" avser förståelsen av de erfarenheter och de förändringsprocesser patienten genomgår under sjukdomsförloppet och behandlingen av denna. Syftet med avhandlingen var: (1) att ytterligare utveckla individuella modeller för patientprocessen vid gradvis debut av hörselnedsättning och att ta CPs erfarenheter under beaktande, (2) att utveckla modeller för patientprocessen vid plötslig debut av hörselnedsättning, (3) att utveckla självskattningsmått på acceptans av hörselnedsättning och att studera dess begreppsvaliditet och samtidig validitet, (4) att undersöka beteendeförändring avsende hälsa för personer som upplever hörselnedsättning. Artikel I (n = 32) och artikel III (n = 9) syftade bland annat till att vidareutveckla modell av patientprocessen som och deras kommunikationspartner som föreslagits av Ida Institutet. I båda studierna användes kvalitativa metoder (fokusgrupper och intervjuer för datainsamling och tematisk analys) för att bygga modeller av patientprocessen personen med hörselnedsättning och dess kommunikationspartner, där båda modellerna kom att inkludera sju huvudfaser av processen. Resultaten jämfördes med sjukvårdspersonalens perspektiv på patientprocessen enligt Ida Institutets modell. Studierna visar nya faser (självvärdering för PHIs process och anpassning för CPs process). Dessutom identifierades likheter och skillnader i jämförelsen mellan sjukvårdspersonalens och patientens perspektiv. Artikel II innehåller en pilotstudie för att undersöka och skapa modeller för patientprocessen vid plötslig förvärvad hörselnedsättning från både vårdgivarens (n = 16) och patientens (n = 4) perspektiv. Båda grupper identifierade alla sex huvudfaser. Dessa inkluderar: medvetenhet; rörelse; diagnos; rehabilitering; självvärdering; och lösning på problemet. Pre-awareness (för-medvetande) fasen kan eventuellt fördröja/förhindra förståelsen för hörselnedsättningen för personer med gradvis tilltagande hörselnedsättning, emedan förståelsen är mer direkt för personer med plötslig förvärvad hörselnedsättning. Artikel IV och artikel V var bägge baserade på en tvärsnittsstudie (n=90). Artikel IV syftade till att utveckla ett frågeformulär angående acceptans av hörselhandikapp (eng. Hearing Disabiliy Acceptance Questionnaire, HDAQ) och att studera dess begreppsvaliditet och samtidig validitet. Resultaten visar att HDAQ fick en två-faktor struktur som förklarde 75,7 % av variansen och uppvisade god intern konsistens (Cronbach’s alpha 0,86). Dessutom hade skalan god samtidig validitet i förhållande till självrapporterad hörselnedsättning, självrapporterad ångest och depression, samt i förhållande till beredskap för förändring. Artikel V (n = 90) syftade till att undersöka stadier av beteendeförändring för personer med tidig, förmodad hörselnedsättning, via den så kallade stages-of-change modellen. Mätinstrumentet för beteendeförändring var University of Rhode Island Change Assessment Scale. Som förväntat var en hög andel av deltagarna (över 90%) i tidiga stadier (eng. contemplation and preparation), vilket stöder stages-of-change modellen. Sammanfattningsvis, bidrar artiklarna i denna avhandling till en bättre förståelse av förändingsprocesser via hörselnedsättning för personer med hörselnedsättning och deras kommunikationspartners.

The aim of the thesis is to investigate the feasibility of using text mining methods to reconstruct patient journeys from unstructured clinical narratives. A novel method to extract and represent patient journeys is proposed and evaluated in this thesis. A composition of methods were designed, developed and evaluated to this end; which included health-related concept extraction, temporal information extraction, and concept clustering and automated work-flow generation. A suite of methods to extract clinical information from healthcare narratives were proposed and evaluated in order to enable chronological ordering of clinical concepts. Specifically, we proposed and evaluated a data-driven method to identify key clinical events (i.e., medical problems, treatments, and tests) using a sequence labelling algorithm, CRF, with a combination of lexical and syntactic features, and a rule-based post-processing method including label correction, boundary adjustment and false positive filter. The method was evaluated as part of the 2012 i2b2 challengeand achieved a state-of-the-art performance with a strict and lenient micro F1-measure of 83.45% and 91.13% respectively. A method to extract temporal expressions using a hybrid knowledge- (dictionary and rules) and data-driven (CRF) has been proposed and evaluated. The method demonstrated the state-of-the-art performance at the 2012 i2b2 challenge: F1-measure of 90.48% and accuracy of 70.44% for identification and normalisation respectively. For temporal ordering of events we proposed and evaluated a knowledge-driven method, with a F1-measure of 62.96% (considering the reduced temporal graph) or 70.22% for extraction of temporal links. The method developed consisted of initial rule-based identification and classification components which utilised contextual lexico-syntactic cues for inter-sentence links, string similarity for co-reference links, and subsequently a temporal closure component to calculate transitive relations of the extracted links. In a case study of survivors of childhood central nervous system tumours (medulloblastoma), qualitative evaluation showed that we were able to capture specific trends part of patient journeys. An overall quantitative evaluation score (average precision and recall) of 94-100% for individual and 97% for aggregated patient journeys were also achieved. Hence, indicating that text mining methods can be used to identify, extract and temporally organise key clinical concepts that make up a patient’s journey. We also presented an analyses of healthcare narratives, specifically exploring the content of clinical and patient narratives by using methods developed to extract patient journeys. We found that health-related quality of life concepts are more common in patient narrative, while clinical concepts (e.g., medical problems, treatments, tests) are more prevalent in clinical narratives. In addition, while both aggregated sets of narratives contain all investigated concepts; clinical narratives contain, proportionally, more health-related quality of life concepts than clinical concepts found in patient narratives. These results demonstrate that automated concept extraction, in particular health-related quality of life, as part of standard clinical practice is feasible. The proposed method presented herein demonstrated that text mining methods can be efficiently used to identify, extract and temporally organise key clinical concepts that make up a patient’s journey in a healthcare system. Automated reconstruction of patient journeys can potentially be of value for clinical practitioners and researchers, to aid large scale analyses of implemented care pathways, and subsequently help monitor, compare, develop and adjust clinical guidelines both in the areas of chronic diseases where there is plenty of data and rare conditions where potentially there are no established guidelines.

The purpose of this study is to explore patients’ experiences and preferences concerning communication with primary care, as well as their attitude towards a future digital system to manage communication. The Swedish county councils and municipalities (SKL) is developing a new digital tool as a complement in the communication between patients and physicians, thus this research is a preliminary investigation of a larger approach. The research has been based on 20 semi-structured interviews with patients in ages between 21 and 86 from 13 different health care centers in Sweden. The interviews indicate that the communication between patients and physicians needs development in numerous ways and that the system used by the primary care contributes to negative outcomes in the communication. Patients’ attitudes towards a new digital system to manage communication were investigated and a majority was positive. The study’s results pointed out the importance of the physicians’ attitudes in the physician-patient communication, and brought some possible improvements to be done in the actual primary care system; as for example implementing new communication channels to allow an easier contact of patients with their health care center. The new communication tool was overall well received and even appeared to be a suitable solution for some of the problems discovered along the patients’ journey. The overall results obtained are positive and promising towards its implementation in Sweden.

Situation of families in which a child with spinal muscular atrophy was born, is the topic of this thesis. This rare genetic disease affects neuromuscular system of children and shortens their lives. In most severe cases the failure of respiratory functions comes in the first year of child's life. This thesis is focused on support that Czech system of social and medical services provides to families with this disease. Next, it looks into needs of these families and examine the extent to which the system is able to saturate them. Very important point in this research is also families' perception of quality of care. The research was implemented with use of qualitative methods, mostly by semi-structured interviews which followed families' journey through the system of social and medical services. Then there is a comparison of experience of families with theories, policy and other normative framework and suggestion of steps that should be taken to improve families' satisfaction with services they receive concerning the child's disease. Key words: spinal muscular atrophy, rare diseases, patient's autonomy, patient- centered care, patient journey, quality of care.