This thesis describes a qualitative study exploring the use of critical care diaries from the experiences and perspectives of patients, family members and nurses in a Scottish Intensive Care Unit (ICU). Diaries are currently used in some ICUs across Europe, the UK, Australia and other countries to help patients come to terms with the experience of critical illness. Started in the ICU, the diary is written at the bedside by nurses and family members providing an account of what happened when the patient was in ICU. Following discharge, the diary is handed over to the patient for them to read and refer to during their recovery. Therefore, the diary is used by different people, at different times and in different ways throughout the critical illness journey. However, until recently, research has mainly focused on the diary being read by the patient after ICU as an aid to recovery with little known about family members and nurses despite them being the main authors during the time in ICU. This doctoral research was designed to explore critical care diaries from multiple perspectives and experiences to gain a greater understanding of the different ways in which diaries can be used. Furthermore, it is the first known research study in this area to have been undertaken in NHS Scotland where the use of diaries remains a relatively new practice. The theoretical perspective of Symbolic Interactionism helped to inform the development and design of the research study. A focused ethnographic approach was taken to explore the use of critical care diaries from the different groups identified, during and after a stay in ICU. The setting was an Adult ICU in Scotland where diaries were being used as part of a follow up service for patients and family members after ICU. Data were collected from February 2013 to June 2014. Semi-structured interviews were the main method of data collection. A purposive sampling strategy was adopted to recruit participants in triads with a related patient, family member and nurse involved in their care during the time in ICU. This is a novel and unique approach to research in this area. Four complete triads and two incomplete triads were recruited giving a total of sixteen interviews with four patients, six family members and six nurses. Interviews were supplemented with a small number of formal observations of nurses carrying out diary related activities (n=9) and field notes from time spent at the site. Transcribed interview data were analysed using a thematic approach, uncovering five main themes: (1) Information; (2) Communication; (3) Emotion; (4) Person Centered and (5) Gender. The concept of ‘Stories as joint actions’ developed by the sociologist Ken Plummer in 1995 was used as a framework to discuss and explain the findings. Diaries were found to support information sharing and facilitate communication interactions between nurses, family members and patients in the ICU as well as promoting and demonstrating a person centered approach to care. Emotional support was experienced by family members from writing in and reading the diary during the time in ICU whereas patients experienced emotional support from reading diary entries after the time in ICU. However emotional effort was associated with reading and writing in the diary during and after the time in ICU for patients, family members and nurses. Male family members were found to be less likely to write in the diary compared to female family members. Factors such as gender and literacy appeared to influence diary use however this requires further investigation. A new conceptual model ‘Critical Care Diaries as Joint Actions’ was created to address the complex nature of experiences with critical care diaries. Exploring the use of diaries from multiple perspectives and experiences has provided valuable insight into the different ways in which diaries are used during and after the time in ICU demonstrating that although the diary is primarily written for the patient, family members, nurses and patients use the diary in different ways to support their needs and others needs throughout the experience of critical illness.

Little is known about how nurses learn and use coping and adaptation skills in the workplace. Quantitative studies have identified the factors, nature, and outcomes of nursing stress. However, qualitative studies describing the human experience associated with workplace stress are lacking. The phenomenon of interest for this study using focused ethnographic method is the self-described experience of coping and adaptation associated with workplace stress of registered nurses working 12-hour shifts employed in acute care hospital facilities in east central and central Florida. Three aspects of the phenomena were examined: the self-described experiences of stress, the manner in which coping skills are acquired, and the manner in which adaptation strategies are developed by experienced bedside nursing working 12-hour shifts in acute care hospital facilities. The purposive sample included nine female bedside nurses with five or more years’ experience, working 12 hour shifts in acute care hospital facilities on bedside units, with patient ratios of 4:1 or greater. Data were collected using semi-structured, digitally recorded interviews at mutually convenient locations. The qualitative data were analyzed using inductive, constant, comparative process of coding, sorting, generalizing, and memoing to guide exploration and identify emergent themes and patterns. The predominant theme of stress emerged as the overwhelming sense of duty to the patient. Additional themes of coping and adaptation were noted. Recommendations for research, education, practice and policy are offered to support a healthy and sustainable nursing workforce.

A estratégia Saúde da Família tem sido priorizada em muitos municípios brasileiros. O objetivo desta pesquisa foi conhecer e descrever o significado do cuidado à família do doente mental, atribuído por trabalhadores do Programa Saúde da Família (PSF). Foi utilizado como método a etnografia focada. Tivemos como informantes-chave duas equipes do PSF e como informantes os demais trabalhadores naquela Unidade de Saúde da Família (USF). Os dados foram coletados por um período de quatro meses aproximadamente, contando como instrumentos a observação participante, o diário de campo e entrevistas semi-estruturadas. A pesquisadora permanecia na USF por aproximadamente três horas e meia, alternando entre os períodos da manhã e tarde. Durante a permanência na USF, a pesquisadora observava e anotava suas observações no diário de campo; ao final de cada visita, as anotações eram organizadas de forma a destacar os aspectos que deveriam ser validados. As entrevistas foram gravadas em fita K7 e transcritas pela pesquisadora no mesmo dia em que ocorriam. Posteriormente, foram agrupadas por questões, depois por temas e categorias e em seguida a dissertação sobre os temas. Os agentes comunitários de saúde passaram por um treinamento sobre doença mental e assistência à família no final da coleta de dados. Vários significados foram categorizados entre os temas: a família e o cuidar da família, e o cuidar da doença mental no PSF. Concluímos que a estratégia do PSF favorece uma outra forma de aproximação ao tema família. Na prática, foi possível reconhecer e confirmar através desta pesquisa: o sofrimento familiar; a instabilidade do quadro; as facilidades/dificuldades em relação à adesão ao tratamento, relacionando-as à crença na cura ou à crença na vida melhor, de forma a poder assistir à família do doente mental prescrevendo não criticar; persistir; mais visitas domiciliárias, oferecendo uma atenção maior e estabelecendo vínculo baseando-se na confiança, na sinceridade e na ética. / The Family Health strategy has received priority in many Brazilian communities. This study aimed to get to know and describe the meaning Family Health Program (FHP) workers attribute to care for the families of mental patients. A focused ethnography method was used. Key informants were two FHP teams, while the other workers at that Family Health Unit (FHU) served as informants. Data were collected during a four-month period, using participant observation, field diary and semi-structured interviews. The researcher remained at the FHU for approximately three hours and a half, alternating between mornings and afternoons. While at the FHU, the researcher made observations and wrote them down in the field diary; at the end of each visit, the notes were organized so as to highlight the aspects that had to be validated. The interviews were tape-recorded and transcribed by the researcher on the day they were held. Afterwards, they were grouped by questions and then by themes and categories, followed by the statement on the themes. At the end of the data collection stage, the community health agents went through training on mental health and family care. Various meanings were categorized among the themes: the family and its care, and the care for the mental illness in the FHP. We concluded that the FHP strategy favors another way of dealing with the family theme. This research allowed us to recognize and confirm: family suffering; the instability of the clinical picture; facilities/difficulties related to treatment adhesion, linking them up with the belief in cure or in a better life with a view to delivering care to the families of mental patients, prescribing no criticism, persistence and more home visits, offering greater attention and bonding on the basis of confidence, sincerity and ethics.

Inadequate cancer pain management is a global problem. The problem is particularly worse in developing countries where the majority of patients present with advanced stages of the disease. Nurses play an important role in cancer pain management because they spend the majority of their time with patients. The purpose of the study was to examine role of unit cultures on cancer pain management practices among nurses in Kenya. A focused ethnography was used to explore cancer pain management practices of two different units (general and private) within the same institution. Data were collected for four months in a national referral hospital in Nairobi, Kenya. Purposive sampling was used to recruit participants. A total of twenty five nurses and fourteen secondary participants (e.g., nurse managers) participated in this study. Data were collected through semi-structured interviews, observations, and document reviews. Content analysis was used to analyze the data. The study findings show that the unit culture plays a role in cancer pain management practices. For instance, nurses on the oncology unit prioritize pain while nurses on the private unit prioritize overall patient satisfaction. Nurses in both units do not conduct a comprehensive pain assessment and they do not use validated pain assessment tools. Facilitators, such as availability of analgesics and palliative care training, were helpful in managing cancer pain especially in the oncology unit. Barriers such as, negative attitudes towards opioids and doubting patients’ report of pain continue to hinder adequate cancer pain management in the private unit. Other barriers including lack of pain management policies, assessment tools, and workload, influence cancer pain management practices negatively in both units. Understanding the role of unit culture in nursing cancer pain management practices has important implications for policy and practice. Findings in this study show a divergence of the prevailing training of nurses on pain management and practice. Findings could be used to develop pain management policies and protocols for nurses to use as a guide in cancer pain management. Also, nurse managers could use this findings to improve practice for instance, training in cancer pain management could be expanded to include nurses in the private unit. In terms of research, studies could be done to capture patients’ perspectives regarding cancer pain management, or implementation studies could be carried out to alleviate the barriers identified. Lastly, tailored strategies aimed at changing the culture in a unit to enhance change in practice are needed.

No description available.

No description available.

Palliative care for non-dominant ethnocultural groups is problematized in the palliative care literature, which often presents essentialist conceptions of cultural beliefs on death and dying. Death is often portrayed as a taboo topic within the Chinese community, and thus, the assumption is that dying at home may not be the preferred option. Beyond these stereotypical representations, little is known about what it is like for Chinese immigrants with terminal cancer to receive palliative home care. Home is a complex site where cultural “difference” becomes contextually salient when home care providers introduce palliative care. More is potentially at stake than the violation of a taboo, as Chinese immigrant care recipients, their family caregivers, and home care providers negotiate changes to the existing routines of the home. The purpose of this study was to examine how meanings of home condition negotiations of care between Chinese immigrants with terminal cancer receiving palliative home care, family caregivers, and home care providers. Postcolonial theory provided a critical lens for this focused ethnographic study of palliative home care for Chinese Canadian immigrants. The analysis drew on postcolonial concepts such as Othering, subjugation, and hybridity. The methods included interviews with 11 key informants, and observational visits and interviews were conducted in 4 cases of Chinese immigrant care recipients, their family caregivers, and home care nurses. Two major findings emerged: 1) colonization and distancing and 2) negotiating hybridity. The meaning of home was deeply altered as palliative home care occupied care recipients’ and family caregivers’ everyday lives and represented a form of micro-colonization - the home was metaphorically invaded. The ambivalent relationship between care recipients and home care providers was characterized by a mutuality of need, but care recipients used distancing as a way to resist colonization. Palliative care presented its own unique cultural influence, which was imbued with meanings, beliefs, and practices. For care recipients, the meaning of dying at home was fluid, situational, and contextually informed. Subsequently, differences were created and highlighted in the confrontation between the meaning of palliative care for home care providers and the meaning of dying at home for care recipients. It was in the meeting, blending, clashing, and grappling of differences where participants had to negotiate and generate new, hybrid meanings and practices so that particularized, personal approaches to dying could be achieved. The findings capture the realities and complexities of palliative home care, and highlight the sophisticated and evolving ways providers come to know and care for care recipients and families in their homes. Although culture was prominently featured in participant narratives, the pragmatics of dying at home were more pressing than was adherence to essentialized cultural beliefs of death and dying. A key implication is the need to move away from simplistic conceptualizations of culture to a critical approach that will enable providers to understand and find comfort in working with the fluid, dynamic, and contextually-driven nature of culture and dying at home.

Palliative care for non-dominant ethnocultural groups is problematized in the palliative care literature, which often presents essentialist conceptions of cultural beliefs on death and dying. Death is often portrayed as a taboo topic within the Chinese community, and thus, the assumption is that dying at home may not be the preferred option. Beyond these stereotypical representations, little is known about what it is like for Chinese immigrants with terminal cancer to receive palliative home care. Home is a complex site where cultural “difference” becomes contextually salient when home care providers introduce palliative care. More is potentially at stake than the violation of a taboo, as Chinese immigrant care recipients, their family caregivers, and home care providers negotiate changes to the existing routines of the home. The purpose of this study was to examine how meanings of home condition negotiations of care between Chinese immigrants with terminal cancer receiving palliative home care, family caregivers, and home care providers. Postcolonial theory provided a critical lens for this focused ethnographic study of palliative home care for Chinese Canadian immigrants. The analysis drew on postcolonial concepts such as Othering, subjugation, and hybridity. The methods included interviews with 11 key informants, and observational visits and interviews were conducted in 4 cases of Chinese immigrant care recipients, their family caregivers, and home care nurses. Two major findings emerged: 1) colonization and distancing and 2) negotiating hybridity. The meaning of home was deeply altered as palliative home care occupied care recipients’ and family caregivers’ everyday lives and represented a form of micro-colonization - the home was metaphorically invaded. The ambivalent relationship between care recipients and home care providers was characterized by a mutuality of need, but care recipients used distancing as a way to resist colonization. Palliative care presented its own unique cultural influence, which was imbued with meanings, beliefs, and practices. For care recipients, the meaning of dying at home was fluid, situational, and contextually informed. Subsequently, differences were created and highlighted in the confrontation between the meaning of palliative care for home care providers and the meaning of dying at home for care recipients. It was in the meeting, blending, clashing, and grappling of differences where participants had to negotiate and generate new, hybrid meanings and practices so that particularized, personal approaches to dying could be achieved. The findings capture the realities and complexities of palliative home care, and highlight the sophisticated and evolving ways providers come to know and care for care recipients and families in their homes. Although culture was prominently featured in participant narratives, the pragmatics of dying at home were more pressing than was adherence to essentialized cultural beliefs of death and dying. A key implication is the need to move away from simplistic conceptualizations of culture to a critical approach that will enable providers to understand and find comfort in working with the fluid, dynamic, and contextually-driven nature of culture and dying at home.

This study has explored the culture of nursing home life as experienced by elderly nursing home residents in Taiwan in order to understand, describe and interpret their care needs. In December 2006, the elderly represented 10% of the total population of Taiwan, and this proportion is predicted to increase steadily. In turn, this increase suggested that Taiwan would see ever greater numbers of elderly people with chronic illnesses and physical and mental disabilities. To care for these people, nursing homes have expanded rapidly throughout Taiwan. However, the quality of care provided in these nursing homes has become an urgent matter of concern. Though meeting the residents' care needs is essential for the provision of the best quality care, a review of the available literature shows that the care needs of the elderly residents within the nursing home context are poorly understood, both in Taiwan and internationally. To address this gap in present understanding, a focused ethnographic approach, using participant observation, in-depth interviews and a review of documents, was undertaken between July 2005 and February 2006. The key participants were sixteen elderly residents who were 65 years old and over, had no cognitive impairment and had lived in the nursing home selected for the present study for at least six months. Eight nurses, six nursing assistants, one private nursing assistant, one orderly, one physician's assistant and four family members were also interviewed, with questions put to them being based on the data generated from the observation and in-depth interviews with the elderly residents. All interviews were recorded on a digital recorder and transcribed verbatim. Following this, the data gathered from the in-depth interviews, the participant observation and the review of documents was sorted and indexed using the qualitative software program, NVivo7. A five-step analytic process, based on concepts discussed in previous literature, was used to trace the emerging themes. Nine major care needs were identified by the elderly residents. These included basic functional care needs, emotional support care needs, economic care needs, psychological care needs, environmental care needs, social support care needs, professional care needs, religious care needs and preparation for death care needs. Three themes of nursing home culture were generated; these were collective life, care rituals and embedded beliefs. The findings of the study indicate that the structure and culture of the nursing home contribute to several care needs remaining unmet. In addition, the results reveal that it is necessary to satisfy economic care needs before other care needs can be resolved. These findings fill an important gap in nursing knowledge regarding the delivery of better quality care in nursing homes. They also provide relevant information to nursing practice, nursing education and Taiwanese long-term care policy-making, and provide a sound basis for future residential care research.

A estratégia Saúde da Família tem sido priorizada em muitos municípios brasileiros. O objetivo desta pesquisa foi conhecer e descrever o significado do cuidado à família do doente mental, atribuído por trabalhadores do Programa Saúde da Família (PSF). Foi utilizado como método a etnografia focada. Tivemos como informantes-chave duas equipes do PSF e como informantes os demais trabalhadores naquela Unidade de Saúde da Família (USF). Os dados foram coletados por um período de quatro meses aproximadamente, contando como instrumentos a observação participante, o diário de campo e entrevistas semi-estruturadas. A pesquisadora permanecia na USF por aproximadamente três horas e meia, alternando entre os períodos da manhã e tarde. Durante a permanência na USF, a pesquisadora observava e anotava suas observações no diário de campo; ao final de cada visita, as anotações eram organizadas de forma a destacar os aspectos que deveriam ser validados. As entrevistas foram gravadas em fita K7 e transcritas pela pesquisadora no mesmo dia em que ocorriam. Posteriormente, foram agrupadas por questões, depois por temas e categorias e em seguida a dissertação sobre os temas. Os agentes comunitários de saúde passaram por um treinamento sobre doença mental e assistência à família no final da coleta de dados. Vários significados foram categorizados entre os temas: a família e o cuidar da família, e o cuidar da doença mental no PSF. Concluímos que a estratégia do PSF favorece uma outra forma de aproximação ao tema família. Na prática, foi possível reconhecer e confirmar através desta pesquisa: o sofrimento familiar; a instabilidade do quadro; as facilidades/dificuldades em relação à adesão ao tratamento, relacionando-as à crença na cura ou à crença na vida melhor, de forma a poder assistir à família do doente mental prescrevendo não criticar; persistir; mais visitas domiciliárias, oferecendo uma atenção maior e estabelecendo vínculo baseando-se na confiança, na sinceridade e na ética. / The Family Health strategy has received priority in many Brazilian communities. This study aimed to get to know and describe the meaning Family Health Program (FHP) workers attribute to care for the families of mental patients. A focused ethnography method was used. Key informants were two FHP teams, while the other workers at that Family Health Unit (FHU) served as informants. Data were collected during a four-month period, using participant observation, field diary and semi-structured interviews. The researcher remained at the FHU for approximately three hours and a half, alternating between mornings and afternoons. While at the FHU, the researcher made observations and wrote them down in the field diary; at the end of each visit, the notes were organized so as to highlight the aspects that had to be validated. The interviews were tape-recorded and transcribed by the researcher on the day they were held. Afterwards, they were grouped by questions and then by themes and categories, followed by the statement on the themes. At the end of the data collection stage, the community health agents went through training on mental health and family care. Various meanings were categorized among the themes: the family and its care, and the care for the mental illness in the FHP. We concluded that the FHP strategy favors another way of dealing with the family theme. This research allowed us to recognize and confirm: family suffering; the instability of the clinical picture; facilities/difficulties related to treatment adhesion, linking them up with the belief in cure or in a better life with a view to delivering care to the families of mental patients, prescribing no criticism, persistence and more home visits, offering greater attention and bonding on the basis of confidence, sincerity and ethics.