Background and objectives: Living with acute leukaemia can challenge patients’ physical, emotional and psychological well-being and functioning, but can be a greatly challenging experience for their families, too. Such a life-changing experience can potentially initiate or accelerate a meaning-making process that may be prolonged and demanding. Yet, there is a dearth of empirical evidence with regard to how adult patients with acute leukaemia or their family carers make sense of their illness-related experiences, and, as a consequence, clinicians still lack the knowledge necessary to tailor support to this specific population. Therefore, this qualitative study aimed to explore the processes, through which patients and family caregivers construct their meanings of acute leukaemia. Design and methods: An exploratory design was employed using serial, in-depth interviews, guided by Smith’s Interpretative Phenomenological Analysis approach. Ten adult (>18 years of age) patients with acute leukaemia and eight patient-nominated family caregivers were recruited during a 14-month period from two clinical NHS sites in Scotland. Two serial interviews were conducted with each participant, two to four weeks apart, within the first year of diagnosis or post-relapse. In total, thirty-six interviews were analysed. Results: Findings deriving from patient interviews indicated that acute leukaemia creates a state of imbalance to the person, which may initiate a search for a new equilibrium. Patients’ journeys towards making sense of their illness may involve three inter-changeable processes: decay, transformation and growth. As patients learned of their diagnosis and their treatment commenced, a sense of decay dominated their lives. ‘Feeling like being a prisoner’ and ‘living with an impaired self’ were two common emergent themes. Running in parallel, signs of transformation started to become more evident as time elapsed. Within the third making-sense process, that is to say growth, themes such as strengthened family bonds, and reprioritising values were among the most prominent. Carers’ accounts of their indirect cancer experience revealed that family members made sense of their acute leukaemia-related situation as a state of limbo that was conceptualised as a maze. After being thrust into limbo, the invisible nature of acute leukaemia created difficulties for carers to conceptualise it; however, they experienced its impact on their lives quite hastily. In order to navigate limbo, carers had to learn to steer through their social world and the unfamiliar hospital environment and eventually manage to transcend limbo by employing various coping strategies, by facilitating the cancer journey of their loved ones, and finally, by reconciling with the patient’s illness. Conclusions and future implications: Findings of this contextually and methodologically novel study highlight the complex nature of sense-making for both patients and family caregivers experiencing acute leukaemia. Additional research is warranted to further uncover the various ways in which meaning is initially constructed, negotiated, re-visited and reformed as patients and/or family carers go through the different phases of living with the illness. In any case, clinicians can rely on the findings of the present study in order to provide on-going support and guidance so that patients and carers visualise the ‘invisible’ acute leukaemia and make sense of their illness-related situation in ways that favour their short- and long-term psychosocial adjustment.

Despite the ongoing initiatives of quality improvement collaboratives in healthcare which reflect various multifaceted intervention packages, clear evidence of the effectiveness of the model itself is lacking. Little is known about the true impact of the collaborative approach on improvement outcomes or how specific components are actually implemented within participating organizations. This dissertation reports on empirical qualitative research undertaken to investigate “how” healthcare providers and management describe the experience of being involved in a collaborative network for quality improvement. Using a process evaluation of a sample QI collaborative, this research reveals that frontline staff do not feel the need to conform or be identical to their peer organizations; rather they feel that by participating with them that their high level of care is finally recognized. In addition, the existing communication structure is ineffective for staff engagement and a “QI bubble” seems to exist in terms of knowledge transfer and the idea of collaboration bears out more internally in increased intra-team cooperation than externally between organizations or units. Selected theoretical perspectives from the fields of sociology and organizational behaviour are used as an analytic framework from which the author posits that based on the findings from this case study that in fact collaboratives may not actually function by any of the commonly held assumptions of legitimization, communication and collaboration. A conceptual framework for how these constructs are related in terms of QI collaborative design is proposed for future testing. With further work and on-the-ground testing of this model and relational hypotheses, this research can help the QI community develop a more functional theory of collaborative improvement and use mixed methods evaluation to better understand complex QI implementation.

Despite the ongoing initiatives of quality improvement collaboratives in healthcare which reflect various multifaceted intervention packages, clear evidence of the effectiveness of the model itself is lacking. Little is known about the true impact of the collaborative approach on improvement outcomes or how specific components are actually implemented within participating organizations. This dissertation reports on empirical qualitative research undertaken to investigate “how” healthcare providers and management describe the experience of being involved in a collaborative network for quality improvement. Using a process evaluation of a sample QI collaborative, this research reveals that frontline staff do not feel the need to conform or be identical to their peer organizations; rather they feel that by participating with them that their high level of care is finally recognized. In addition, the existing communication structure is ineffective for staff engagement and a “QI bubble” seems to exist in terms of knowledge transfer and the idea of collaboration bears out more internally in increased intra-team cooperation than externally between organizations or units. Selected theoretical perspectives from the fields of sociology and organizational behaviour are used as an analytic framework from which the author posits that based on the findings from this case study that in fact collaboratives may not actually function by any of the commonly held assumptions of legitimization, communication and collaboration. A conceptual framework for how these constructs are related in terms of QI collaborative design is proposed for future testing. With further work and on-the-ground testing of this model and relational hypotheses, this research can help the QI community develop a more functional theory of collaborative improvement and use mixed methods evaluation to better understand complex QI implementation.

Perceived increased prevalence and levels of awareness of food allergy has become a global phenomenon, making it a major public health concern. Although little is known about its etiology or prevalence, substantial variation in prevalence on a global scale is evident. Studies on food allergy in Asia are reporting an increase in prevalence, particularly in economically developed regions like Hong Kong. Interestingly, risk perception studies have found that Canadians’ perceived prevalence of food allergy surpasses systematic estimates. Moreover, Canadian immigrants are more likely to rate the risk of food allergy as “high” compared to non-immigrants. To explore these issues further, qualitative interviews were conducted with key informants (n=3) and allergic individuals of Asian descent (n=18) in order to capture their lived experience with food allergies. Interviews lasted 30 minutes on average and they were tape recorded and transcribed verbatim for subsequent thematic analysis using QSR International’s NVivo 9. Results are organized around four major themes: perceived prevalence, risk perception, management and coping, and quality of life. With respect to perceived prevalence and risk, participants found food allergies to be more common in Canada than in Asia. Participants also agreed that having a food allergy is more manageable in Canada as a result of the policy environment (e.g., food labelling and school board policies). In addition, participants had dealt with skepticism and disbelief about their food allergy in Asia, impacting their quality of life. These findings demonstrate the need to recognize the varied impacts and experiences of food allergy among new Canadians, given that immigrants represent a large and growing proportion of the Canadian population.

Photovoice is a Participatory Action Research (PAR) method that generates knowledge about the lived experiences of members of marginalized communities. Participants are understood to be experts of their experiences and are asked to take photos of their lives. Photovoice is highly flexible in application and participants can have varying degrees of involvement in components of the method, from design to dissemination of findings. Although providing opportunity for a high degree of participation is ideal, this is less frequently demonstrated in the literature. To understand the impact of participation on the type of information generated, individuals living in supportive housing were asked to share their experiences of their housing. Perspectives of consumers of supportive housing have had little presence in the housing literature, particularly within a photovoice framework. Therefore, this research asked consumers about their housing as well as how they experienced their participation across two photovoice projects that afforded more and less opportunity for participation. This dissertation consists of three studies conducted on two distinct projects. Studies 1 and 2 were conducted on the HousingPlus Photovoice Project, an investigator initiated and driven application of photovoice. Study1 examined what can be learned about supportive housing and revealed rich information about participants’ experiences with their housing. Study 2 examined experiences of stakeholders with the photovoice method, including participants and project contributors. Study 2 revealed three distinct approaches to photography: planned, discovery-oriented, and task-oriented approaches to photography. Participants who used a discovery-oriented approach tended to benefit the most from this project. Contributors shared the common value of supporting participation but had divergent perspectives of the photographs, an important product of participation. Contributors tended to focus either on the external or internal photo narratives. Study 3 was conducted on the Home Photovoice Project, which was initiated and run by a community-based agency. This second project provided a point of comparison to determine whether a more participatory application of photovoice would result in similar or distinct findings related to supportive housing and stakeholder experiences with the method. Although the three distinct styles of participation observed in the HousingPlus Photovoice Project were also observed in the Home Photovoice Project, most participants developed a planned approach to photography over time. Participants who began with a planned or task-oriented approach tended to benefit the most from this more participatory application of photovoice. More was learned about shared participant experiences and perspectives in the Home Photovoice Project. In contrasting these projects it is apparent that the choice of methodological focus significantly impacts the photos and narratives produced, approaches to participation, and stakeholder experiences of photovoice. This has important implications for the design and delivery of photovoice projects.

Yes / Objective: This article gives an in-depth insight into the ways in which communication between midwives and the birthing woman shape the birth experience. Background: Birth is a significant life event for many women that can have profound, long-lasting effects on how they see themselves as women and mothers. Within the literature the importance of control over the birth experience and the support that the birthing woman receives from midwives is stressed. Methods: Six women who had recently given birth participated in one-to-one semi-structured interviews designed to explore the kinds of support they received before, during and after their birth. An inductive thematic analysis was employed in order to identify and explore key issues which ran throughout the interviews. Results: Within the interviews the importance of being an active mother, someone who made decisions in relation to her labour, was stressed. The analysis explores the ways in which communication style and compassionate care either enabled or prevented women from adopting the position of ‘active’ mother. Conclusion: It is argued that a personal connection with midwives and clear and open communication which places the birthing woman in a position of control are key to positive birth experiences.

No description available.

This study considers the contested meaning of public education through a qualitative investigation of Patrick Henry School of Science and Arts, a charter elementary school in Richmond, Virginia. The central research question that guides this study is “How do parents construct the idea of public schools as they explain their choice of Patrick Henry Charter School?” To answer this question I conducted a constructivist inquiry that involved a series of 16 semi-structured interviews with a maximum variation sample of Patrick Henry parents concerning their ideas about the school and about public education. The analysis of these interviews led to a grounded theory of the parents’ ideas as well as a case report constructed from the categorized units of data that explores the core themes of the theory. This study also addresses two sub-questions: (1) “How do the parents’ ideas about public schools reflect the logics embedded in the larger policy discourses concerning charters and the reinvention of public education?” and (2) “How do the parents’ ideas about public schools reflect the local public discourse around the public-ness of the school?” To answer the first sub-question I use my review of literature to develop an understanding of the reform debates around charter schools and their relationship to the contested ideas of public education. To answer sub question two, I present an adapted constructivist qualitative analysis of the public discourse that surrounded the school from April 2007 – when the idea of the school was first proposed at a school board meeting – until December 2011 – a year and a half after the school opened its doors. To capture the public discourse I collected and analyzed articles, editorials and letters from six local print publications (newspapers, weekly magazines) as well as the public comment portion of the minutes from Richmond School Board meetings. This analysis resulted in the construction of two competing narratives about the school, the juxtaposition of which shed light on the how idea of public-ness was constructed in the public discourse.

This is an ethnographic case study of the inclusion of a fifteen-year-old male with severe disabilities in general education classes in a four-year high school in a medium-sized Midwestern city. The study took place during the student's freshman and sophomore years. The investigator interviewed 17 of the participants in the student's inclusion; administrators, special education staff, general education teachers, and parents--accumulating over 450 pages of transcribed interviews in the process. She spent five days in field observation of the student's general education classes and other school activities--all recorded in substantial on-site notes--and had access to relevant documents concerning the student in the school's files. The NVivo 8 computer software was used to code the data. A Story of High School Inclusion: An Ethnographic Case Study examines these questions: How did parents and professionals (e.g., school administrators, special education staff, general education teachers, state-level special education consultants) involved in the process of the inclusion of a student with severe disabilities in general education high school classes define inclusion? How did they characterize their attitudes toward it? What role did each of them play in preparing for the student's inclusion? How did each of them describe their part in the process of the student's inclusion? Do the accounts of those individuals involved in the inclusion of the student with severe disabilities align or do they suggest tensions? What was the impact of these alignments or tensions on the inclusion process? All the participants interviewed in the study agreed with and supported the idea of inclusion; however, except for the parents, those expressions of agreement and support were typically followed with a "but" that led on to a variety of reservations and qualifications. Preparation for the student's inclusion in high school was thorough, consisting in a series of comprehensive meetings involving all parties with a role in the student's inclusion--even to the point of seeking the input of those who had worked with the student in junior high school. During the day-to-day implementation of these plans, the student's general education teachers were pleased with his comprehension of, and participation in, the academic material. However, the paraeducator was often observed to be filling an instructional role that properly belonged to the qualified teacher. Moreover, her presence had a compromising effect on the student's social interactions. A two-way matrix was created to discover areas of agreement and disagreement among the parties to the student's inclusion. These rich data reveal that there was broad agreement among all the school participants, academic and administrative, but that strong tensions arose between the student's parents and the school personnel. These results suggest that families and schools may concur at a philosophical level regarding inclusion, but disagree at the implementation level, resulting in tensions and conflicts that might be prevented or ameliorated by more open and direct communication.

The aim of this thesis was to describe and analyse perceptions of psychosis care among those involved in care, foreign‐born persons with psychoses, their families and health care staff, and further to reach agreement about core components in psychosis care. This was in order to find out whether current psychosis care in Sweden is suitable for foreign‐born persons and theirfamilies. The study design was explorative and descriptive. Health care staff (n=35), persons with psychosis (n=22) and families (n=26) of persons with psychosis were chosen from different regions in Southern Sweden. To capture health care staff’s experiences and to explore whether specific needs occurred within psychiatric care, nine focus group interviews were held. The perspectives of psychosis care among persons with psychoses and their families were captured through individual interviews. Finally, a study was accomplished all over Sweden in which staff, foreign‐born persons with psychosis and foreign-born families of persons with psychoses answered a questionnaire to identifycore components in psychosis care of foreign‐born persons and their families. There was agreement that the core components in psychosis care concern general psychiatric caring, even though varying perceptions were identified. Asking about foreign‐born persons’ religious and ethnic background or having the possibility to decide whether care should be provided by male or female staff were agreed to be less important. No agreement could be reached concerning the importance of considering different perceptions of psychosis care, treatments and different ways of managing the psychosis. Nor could agreement be reached as to whether staff should have specific cultural knowledge and whether interpreters should be unknown to the family but speak the right dialect. Perceptions among staff in somatic and psychiatric care as well as perceptions among foreign‐and Swedish‐born persons with psychosis and their families were more similar than different. General psychiatric care is important for Swedish‐born as well as foreign‐born persons with psychosis and their families, indicating the importance of not letting culturally determined perceptions dictate the care and take away energy from health care staff and make them lose their focus on the basic elements in general psychiatric care. However, within the general care there were individual perceptions on whose importance those involved in care did not agree. Further development suggested is to illuminate the importance of identifying individual perceptions which may differ between different persons and could be related to cultural background. Staff need to acquire strategies so they can easily manage to encounter and offer general care to foreign‐born persons. Development must be achieved on both an organizational level and an individual level. / Disseration