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Surviving a critical illness through being-there-with each other

Support provided by non-professional family members is generally believed to be beneficial to the recovery of critically ill patients. Nursing researchers have conducted a number of studies about the experiences of critically ill patients and the needs of their families. However, few have investigated the experiences and interactions of both this group of patients and their main informal carers (principal lay support persons) simultaneously. This study has sought to rectify this situation by capturing and undertaking a theoretical analysis of the perceptions and experiences of both critically ill patients and their principal lay support persons. As a result a substantive theory has been developed through the use of grounded theory method in the Study. This theory identifies and explains the actions and interactions between critically ill patients and their principal lay support persons who participated in the Study, whom the researcher observed and interviewed during the data collection period. Data were collected during the critically ill participant¡¦s hospitalisation and three months following his/her discharge from hospital. Implications of the study concern nursing practice as well as outcomes of the Study as these are described and explained through the substantive theory developed from it. Testing of this theory in the context of critically ill patients and their lay support persons provides opportunities for further research, as does the overall phenomenon of lay person support for critically ill patients. Grounded theory was the method used in the Study. Data for the Study were collected by participant observation of, and face-to-face interviews with patients who had a critical illness and their principal lay support persons. Two interviews were conducted with each of these participants. Patients and their principal lay support persons were initially interviewed separately to obtain information about their individual perspectives of what support meant to them during an episode of critical illness. A second interview was conducted three months later to facilitate the researcher¡¦s understanding of both patients¡¦ and principal lay support persons¡¦ experiences during the recovery process. A total of sixteen (16) interviews were conducted in this study from eleven (11) participants before data saturation occurred. The data collected were analysed by constant comparative analysis integral to the grounded theory approach. Data analysis was also facilitated by a computer-aided qualitative data analysis software NUD*IST 4 (Non-numerical Unstructured Data Indexing, Searching, and Theorizing Version 4). This software aided the analysis to the extent that it provided an efficient data management system. Three categories, 1) being-there-with, 2) independing, and 3) coping were discovered from the data. Being-there-with is an essential and mutual need between the patients and their principal lay support persons during the episode of critical illness and later recovery. Independing on the other hand is the process through which these patients experiment with regaining their independence. It involves their experiences of making decisions and re-building confidence. Coping is the process whereby the principal lay support persons and patients manage their stress during the critical illness and later recovery. During the coping process, there is an uncertainty in principal lay support persons about their loved ones¡¦ situation. They experience ¡¥coping with each day as it comes¡¦ and ¡¥learn to adjust¡¦ to the stress arising from the changing and unpredictable condition of the patients. Being-there-with is also a major coping strategy for both the principal lay support persons and patients to manage their stress. The three categories of being-there-with, independing, and coping arising from this Study provided the basis from which to identify its core category, ¡¥mutually being-there-with each other¡¦, and to theorize the core process that represents the substantive theory about experiences and interactions of principal lay support persons and their loved ones during a critical illness situation. The core process that represents the developed substantive theory is ¡¥surviving a critical illness through mutually being-there-with each other¡¦. This theory explains the complex, dynamic, and interactive nature of principal lay person support which both patients and principal lay support persons experienced during an episode of critical illness and later recovery. An understanding of this dynamic, complex and interdependent relationship between patients and lay support persons will better enable nurses to consider both these parties as the focus of their care. Furthermore, because the substantive theory emerging from this Study captures the process of patients¡¦ and lay support persons¡¦ recovery from an episode of critical illness it provides a conceptual map of how this process may progress. In this Study the theory enables nurses to gauge both patients¡¦ and lay support persons¡¦ progress along the road to recovery and to consider this in their plan of care. Several implications for nursing practice emerged from this study. These relate to the needs of critically ill patients and their principal lay support persons during the process of being critically ill and recovering which they experienced together. Because this Study identified the importance to both patients and principal lay support persons being-there-with each other, a key implication of the study is the need for intensive care units to adopt flexible visiting hours to maximise opportunities for this to occur. Nevertheless, at the same time nurses need to be vigilant that flexible visiting does not prove onerous and overtire patients or their principal lay support persons. A further implication of the Study for nursing practice closely related to its finding of the importance of the core category ¡¥mutually being-there-with each other¡¦ to patients and their lay support persons in the context of critical illness and recovery, is the need for nurses (and other health professionals) to be willing to care for both parties as an inseparable dyadic unit. This Study also has implications relating to the care of critically ill patients following their discharge home. The experience of participants in this Study revealed the importance of careful discharge planning, post-ICU follow-up, and continuity of care in the community to enhance recovery of the patients and to address the special needs of their principal lay support persons. From a researcher¡¦s perspective the process of recruitment for this study demonstrated that recruitment of vulnerable populations (like ICU patients) is a challenge to the researcher in terms of ethical considerations, particularly when the researcher is attempting to meet the expectation of primary selection for theoretical sampling in grounded theory method. Suggestions are made in this thesis about how to tackle this challenge in future studies. At the conclusion of the Study, a number of suggestions for further research are made relating to the findings. These include the recommendation that the substantive theory developed in this Study be tested with a larger population. It is also suggested that a longitudinal follow-up study, which extends beyond a three months recovery period, be conducted to further understand the experiences and support needs of post-ICU patients and their principal lay support persons. In addition, more research is required to identify best practice regarding discharge planning, post-ICU follow-up care, and continuity of care in the community for critically ill patients and their principal lay carers. / PhD Doctorate

Identiferoai:union.ndltd.org:ADTP/242211
Date January 2004
CreatorsChiang, Chung-Lim Vico
Source SetsAustraliasian Digital Theses Program
LanguageEnglish
Detected LanguageEnglish
Rightshttp://www.newcastle.edu.au/copyright.html, Copyright 2004 Chung-Lim Vico Chiang

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