Thesis (M. Phil.)--University of Hong Kong, 1998. / Includes bibliographical references (leaves 145-151).

Thesis (M. Sc.)--University of Hong Kong, 2002. / Includes bibliographical references (leaves 111-116).

Thesis (Ph. D.)--West Virginia University, 2006. / Title from document title page. Document formatted into pages; contains xi, 214 p. : ill. (some col.). Vita. Includes abstract. Includes bibliographical references (p. 155-173).

Thesis (M.Soc.Sc.)--University of Hong Kong, 1997. / Includes bibliographical references. Also available in print.

No description available.

No description available.

No description available.

Survival following critical illness is associated with a significant burden of physical and psychosocial morbidity and recovery is often protracted and/or incomplete. Recovery has been measured using, almost exclusively, generic health-related quality of life (HRQoL) questionnaires. There is, however, an inexorable lack of consensus on the conceptual definition of HRQoL, and existing measures have tended to reflect overtly biomedical concerns such as morbidity and impairment at population level. Limited empirical or theoretical work has examined the extent to which widely used measures reflect the individual’s concerns, “health”-related and otherwise. The primary aims of this PhD are to examine HRQoL among a rarely studied sub group of the critically ill patient population: survivors of prolonged critical illness, and to explore the extent to which professionally endorsed measures capture their experiences of and perspectives on the recovery process. The implications of “patient-centredness” are both diverse and far-reaching in terms of policy, practice and critical care outcomes research, and are discussed throughout. A review of the literature among a well studied sub group of the patient population (survivors of Adult Respiratory Distress Syndrome) identified the widespread use of generic and ancillary measures which were invariably developed for use among other patient populations. This approach was seen to offer limited insight to the putative relationship between critical illness-related morbidity and HRQoL. Reflecting existing professional recommendations and practice, the Short Form 36 (SF-36) and the EuroQoL were administered by post to 20 survivors of prolonged critical illness at up to 6 months following ICU discharge. Each subsequently participated in a semi-structured interview, the purpose of which was to explore experiences and perceptions of ongoing morbidity within the contexts of the critical illness “journey” and, importantly, everyday life. A small number (n=5) participated in cognitive interview in order to explore both the everyday logistics of questionnaire completion and the often startling inconsistencies between verbal and questionnaire response. Analysis here revealed the unexpectedly diverse and normally hidden processes through which survivors interpreted and responded to standardised questionnaire items, challenging traditional (i.e. psychometric) notions of validity. Data from the semi-structured interviews were “mapped” onto the dimensions of the SF-36, revealing the highly contextualised and complex inter-relatedness of biomedically defined and ostensibly discrete aspects of experience. Morbidity was conceptualised by survivors in terms of the adaptive and interpretive processes adopted in everyday life (as opposed to a source of loss) and was generally under-reported in questionnaire form. An alternative explanatory framework for HRQoL was subsequently developed. Data were also analysed with reference to the “biographical narrative” of critical illness, a strategy which revealed the significance of survivors’ own stock of “life experience” (health-related and otherwise) in these interpretive and adaptive processes. The unexpectedly phlegmatic nature of survivors’ accounts directed attention to the narrative form, lending credibility to survivors’ claims that “things weren’t that bad”; accounts of seemingly intolerable morbidity were perceived, for example, as “a lucky escape”. This data also revealed, however, the influence of shortfalls in the processes and delivery of acute hospital rehabilitation upon the efficacy of these interpretive and adaptive processes. Mixed methods approaches to HRQoL, in summary, offer significant insights into survivors’ conceptualisations of morbidity, recovery, quality of life and the complex inter-relationships therein. Attention to the processes of adaptation also offers significant potential for the development of patient-centred measures of outcome and the expedition of the recovery process in ways which are most meaningful to survivors.

Objectives: Reviews have suggested that stroke patients and family members frequently hold different impressions of the patient’s quality of life. Understanding such differences may be particularly useful for clinicians who wish to help clients adjust to the effects of a stroke. The aim of this study was to investigate how the responses of stroke survivors and their family members differ when indicating the stroke survivors’ quality of life, and whether such differences are associated with greater time elapsed since the stroke onset. Design and Method: A related-subject design and a correlational design were utilised in this study. People who had suffered a stroke within five years were compared with nominated members of their family. All participants indicated the perceived quality of life of the stroke survivor using the WHOQOL-BREF. The time elapsed since their stroke was recorded and the participants’ mood was assessed. Results: No significant differences were found between the stroke survivors and the family members’ views of the stroke survivors’ quality of life. However, agreement between these groups was found to be low in the Social domain of the WHOQOLBREF. Greater time since the stroke onset was found to correlate with greater discrepancy between groups in the Social domain, but not in the other domains. Conclusions: The results suggest that families’ adjustment to stroke does not conclude when improvement in function slows. Instead, a stroke continues to affect families years after the initial stroke. These findings may be interpreted within the context of quality of life response shift, where changes in the stroke survivors’ evaluation of their social lives may not be identified by their families. This may reflect a common trajectory following stroke. The methodological limitations of this study and suggestions for future research are discussed.

Bakgrund: Endometrios är en kronisk inflammatorisk sjukdom som uppskattas drabba 10 procent av alla personer med livmoder i fertil ålder. Sjukdomen har setts påverka flera aspekter i livet och kan orsaka stort lidande hos individen. Syfte: Syftet med denna litteraturöversikt var att undersöka hur personer med endometrios upplever att olika aspekter livskvaliteten påverkas av sjukdomen. Metod: Litteraturöversikten baserades på vetenskapliga artiklar publicerade i databaserna PubMed och CINAHL. Efter kvalitetsgranskning av 23 artiklar återstod 17, varav två kvalitativa och 15 kvantitativa. Resultaten från de inkluderade studierna gick sedan igenom och delades upp under rubriker utifrån de aspekter av livskvalitet som framkom. Huvudresultat: Endometrios visades ha en negativ påverkan på de drabbades liv och vardag. Kvinnor med endometrios skattade signifikant lägre generell livskvalitet och hälsorelaterad livskvalitet än kvinnor utan sjukdomen. De vanligast förekommande symtomen var olika typer av smärta vilka sågs ha en signifikant negativ påverkan på livskvaliteten och det dagliga livet, som nedsatt produktivitet inom arbete och utbildning. Endometrios innebar även psykiska begränsningar i form av antingen minskat generellt välmående eller sämre emotionell funktion. Gällande socialt nätverk visade flera studier att kvinnor med endometrios upplevde en negativ påverkan på relationer och/eller deras sociala liv. Normalisering och okunskap kunde bidra till försening i diagnos och påverkan på livskvalitet. Även vårdpersonalens kunskap inom ämnet ansågs vara otillräcklig i många fall. Slutsats: Kvinnor med endometrios hade lägre livskvalitet än kvinnor utan sjukdomen. Vidare forskning kring sjukdomen kan förbättra behandling och påskynda diagnostisering, vilket kan påverka den fysiska, psykiska och sociala funktionen hos individen. Detta kan minska kostnaderna vid såväl sjukskrivning som lägre arbetsproduktivitet samt frekventa vårdbesök relaterade till feldiagnostisering och vårdfördröjning. / Background: Endometriosis is a chronic inflammatory disease estimated to occur in 10 percent of the population with uterus of reproductive age. The disease has been observed to affect many aspects of life and causing great suffering for the individual. Aim: The aim of this literature review is to examine how people with endometriosis are experiencing how different aspects of quality of life is affected by the disease. Method: The literature review was based on scientific articles published in PubMed and CINAHL. After examining the quality of 23 articles 17 remained, including two qualitative and 15 quantitative studies. The results of the included studies were broken down and assorted into subgroups depending on which aspects of quality of life mentioned. Main Results: The result showed that endometriosis had a negative impact on the daily lives of those suffering of the disease. Women with endometriosis stated significantly lower overall quality of life and health-related quality of life than women without the disease. The most commonly reported symptoms were different types of pain which had a significant negative impact on quality of life and daily life, such as reduced work and education productivity. Endometriosis could also lead to mental limitations as decreased general wellbeing or emotional function. Regarding the social aspects, multiple studies showed that women with endometriosis experienced that the disease had a negative influence on relationships and/or their social life. Normalization and insufficient knowledge about the disease could contribute to delay in diagnosis and impact the quality of life. The knowledge of health care personnel was also seen inadequate in many cases. Conclusion: Women with endometriosis had lower quality of life than women without the disease. Further research could improve treatment and speed up diagnosis, affecting the physical, psychological and social functioning of the individual. This could reduce the costs from both sick leave and decreased work productivity as well as frequent health care visits related to misdiagnosis and delay of treatment.