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Patient autonomy in highly technological care environments from a caring perspective
Blekinge Institute of Technology, Faculty of Engineering, Department of Health.
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background

Patients in highly technological care environments are severely ill, and are often suffering from a reduced physical and/or cognitive capacity following their illness and treatment, making them exceedingly vulnerable. The most severely ill patients are cared for in the intensive care unit. These vulnerable persons are cared for in an environment traditionally associated with a paternalistic care culture, which implies that patients are at risk of being overridden in relation to ethical issues, and of having their autonomycompromised. The question is whether it is possible for the patient to be capable and autonomous in this context. Advanced home care involves an increasing amount of advanced medical technology, and is then to be characterized as a highly technological care context. The advancedhome care context is different from the intensive care context in that the patients are not sedated, they are cared for at home, and they are expected to be the masters of theirhome environment. They recognize their home as private territory which gives them the right to decide what to do and how and when to do it. Their need for technology and care from formal/informal carers points to a vulnerability on the part of the patient, risking a hidden paternalism in terms of overprotectiveness, including excesses of care.These aggravating circumstances may exert an influence on the patient’s everyday life, threatening the patient’s possibilities of remaining/becoming autonomous. This thesis is a response to the absence of consensual understanding in nursing of the concept of patient autonomy in a highly technological care context, as well as an answer to the lack of knowledge of the phenomenon of patient autonomy in highly technological care environments from the patient perspective and in a caring context.

Aim

The overall aim of this thesis was to describe and elucidate patient experiences of autonomy in highly technological care environments, and to create an extended understanding of the concept of patient autonomy in a highly technological care context, from a caring perspective.

Methods

In answering to the aim of this thesis, a diversity of qualitative methods for data collection and data analysis was used. Two empirical studies comprising individual patient interviews (n=23) within highly technological care environments were carried out, in intensive care (II) and in advanced home care (III). The patient experiences were analyzed through inductive content analysis (II) and descriptive phenomenology (III). Theoretical development was accomplished through a concept analysis (I) from scientific literature, and a concluding metasynthesis (IV) of the previous studies (I-III).

Findings

The concept analysis (I) revealed that increased vulnerability was the antecedent of patient autonomy in a caring context. It further showed that patient autonomy is not to be understood as absolute but as changing throughout the care episode. The interviews with patients being cared for in intensive care described patient autonomy in this highly technological care environment as a “trajectory towards partnership in care depending on state of health and mutual understanding”. Patient autonomy, in advanced home care including advanced medical technology, was differently described as “befriending everyday life when bringing technology into the private sphere”. The findings of the concept analysis (I) as well as the findings from the empirical studies of patient experiences of autonomy (II-III) resulted in the concluding theoretical framework (IV), adding new knowledge to ameliorate the clarity of the concept. A tentative framework, the Control-Partnership-Transition framework of patient autonomy, was delineated. This framework comprises four strategies, the strategy of control, of partnership, of trust, and of transition, used by patients to preserve or obtain autonomy in highly technological care environments. To experience autonomy, patients in highly technological care environments want to be considered as capable agents, and not only as a vulnerable person in need of care. Their thoughts and experiences reveal that patient autonomy should be understood as a process, something that changes over time, and is dependent on their health conditionas well as on others around them and the care environment. The knowledge obtained could be used to facilitate the adherence of health care professionals to ethical principles and codes related to patient autonomy, hence strengthening the patients’ position in regard to their autonomy.

Place, publisher, year, edition, pages
Lund: Lund University, Faculty of Medicine , 2016. , p. 103
Series
Lund University, Faculty of Medicine Doctoral Dissertation Series 2016:73, ISSN 1652-8220 ; 2016:73
Keywords [en]
autonomy caring context co-determination concept analysis concept development control descriptive phenomenology highly technological care inductive content analysis metasynthesis partnership patient experiences theoretical development transition trust vulnerability
National Category
Nursing
Identifiers
URN: urn:nbn:se:bth-16941ISBN: 978-91-7619-299-3 (print)OAI: oai:DiVA.org:bth-16941DiVA, id: diva2:1241827
Public defence
2016-06-10, Hörsal 1, HSC, Baravägen 3, Lund, 09:00
Opponent
Supervisors
Note

Doktor i medicinsk vetenskap, inriktning omvårdnad

Available from: 2018-09-11 Created: 2018-08-24 Last updated: 2018-09-11Bibliographically approved
List of papers
1. A trajectory towards partnership in care - Patient experiences of autonomy in intensive care: A qualitative study
Open this publication in new window or tab >>A trajectory towards partnership in care - Patient experiences of autonomy in intensive care: A qualitative study
2015 (English)In: Intensive & Critical Care Nursing, ISSN 0964-3397, E-ISSN 1532-4036, Vol. 31, no 5, p. 294-302Article in journal (Refereed) Published
Abstract [en]

Objective: The aim of this study was to describe and elucidate patient experiences of autonomy in an intensive care context from a caring perspective. Background: Patients in intensive care units (ICUs) are critically ill and in a dependent and vulnerable position. There is thus a risk of staff taking command not only of the patients’ vital functions but also of their decision-making. Methods: A qualitative design was selected. Individual interviews were conducted with 11 adult patients with an intensive care episode of two days or more at six Swedish ICUs. The data were analysed using Inductive Content Analysis. Findings: Patient autonomy in intensive care was shown to be ’A trajectory towards partnership in care depending on state of health and mutual understanding’. It was experienced through acknowledged dependence, being recognised as a person, invited participation and becoming a co-partner in care. Conclusion: Patients in need of intensive care wanted to be involved in making decisions about their care as this creates a trusting and healthy care environment. Greater awareness is required about the ICU patient not only being a passive care recipient but also an active agent and where involvement in decision-making and participation in care are crucial. © 2015 Elsevier Ltd.

Keywords
Caring; Content analysis; Intensive care; Interviews; Patient Autonomy; Qualitative research
National Category
Nursing
Identifiers
urn:nbn:se:bth-10886 (URN)10.1016/j.iccn.2015.04.003 (DOI)000362147700005 ()2-s2.0-84941738418 (Scopus ID)
Available from: 2015-10-26 Created: 2015-10-26 Last updated: 2018-08-27Bibliographically approved
2. Patient autonomy in a high-tech care context: A theoretical framework
Open this publication in new window or tab >>Patient autonomy in a high-tech care context: A theoretical framework
2018 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 21-22, p. 4128-4140Article in journal (Refereed) Published
Abstract [en]

Aims and objectives: To synthesise and interpret previous findings with the aim of developing a theoretical framework for patient autonomy in a high-tech care context. Background: Putting the somewhat abstract concept of patient autonomy into practice can prove difficult as when it is highlighted in healthcare literature, the patient perspective is often invisible. Autonomy presumes that a person has experience, education, self-discipline and decision-making capacity. Reference to autonomy in relation to patients in high-tech care environments could therefore be considered paradoxical, as in most cases, these persons are vulnerable, with impaired physical and/or metacognitive capacity, thus making extended knowledge of patient autonomy for these persons even more important. Design: Theory development. Methods: The basic approaches in theory development by Walker and Avant were used to create a theoretical framework through an amalgamation of the results from three qualitative studies conducted previously by the same research group. Results: A theoretical framework-the control-partnership-transition framework-was delineated disclosing different parts cocreating the prerequisites for patient autonomy in high-tech care environments. Assumptions and propositional statements that guide theory development were also outlined, as were guiding principles for use in day-to-day nursing care. Four strategies used by patients were revealed as follows: the strategy of control, the strategy of partnership, the strategy of trust and the strategy of transition. Conclusions: An extended knowledge base, founded on theoretical reasoning about patient autonomy, could facilitate nursing care that would allow people to remain/become autonomous in the role of patient in high-tech care environments. Relevance to clinical practice: The control-partnership-transition framework would be of help in supporting and defending patient autonomy when caring for individual patients, as it provides an understanding of the strategies employed by patients to achieve autonomy in high-tech care contexts. The guiding principles for patient autonomy presented could be used in nursing guidelines. © 2018 John Wiley & Sons Ltd.

Place, publisher, year, edition, pages
Wiley-Blackwell, 2018
Keywords
Autonomy, Caring, Concept development, High-tech care, Metasynthesis, Theory development
National Category
Nursing
Identifiers
urn:nbn:se:bth-16929 (URN)10.1111/jocn.14562 (DOI)000446561500030 ()2-s2.0-85050941568 (Scopus ID)
Available from: 2018-08-21 Created: 2018-08-21 Last updated: 2018-10-30Bibliographically approved
3. Concept analysis: patient autonomy in a caring context
Open this publication in new window or tab >>Concept analysis: patient autonomy in a caring context
2014 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 70, no 10, p. 2208-2221Article in journal (Refereed) Published
Abstract [en]

Aim. This paper is a report of an analysis of the concept of patient autonomy. Background. Many problems regarding patient autonomy in healthcare contexts derive from the patient's dependent condition as well as the traditional authoritarian position of healthcare professionals. Existing knowledge and experience reveal a lack of consensus among nurses regarding the meaning of this ethical concept. Design. Concept Analysis. Data sources. Medline, CINAHL, The Cochrane Library and PsycINFO were searched (2005-June 2013) using the search blocks 'autonomy', 'patient' and 'nursing/caring'. A total of 41 articles were retrieved. Review Methods. The Evolutionary Method of Concept Analysis by Rodgers was used to identify and construct the meaning of the concept of patient autonomy in a caring context. Results. Five attributes were identified, thus creating the following descriptive definition: 'Patient autonomy is a gradual, time-changing process of (re-)constructing autonomy through the interplay of to be seen as a person, the capacity to act and the obligation to take responsibility for one’s actions’'. Patient vulnerability was shown to be the antecedent of patient autonomy and arises due to an impairment of a person's physical and/or mental state. The consequences of patient autonomy were discussed in relation to preserving control and freedom. Conclusion. Patient autonomy in a caring context does not need to be the same before, during and after a care episode. A tentative model has been constructed, thus extending the understanding of this ethical concept in a caring context.

Place, publisher, year, edition, pages
Wiley, 2014
Keywords
caring, concept analysis, nurses, nursing, patient autonomy
National Category
Nursing
Identifiers
urn:nbn:se:bth-6456 (URN)10.1111/jan.12412 (DOI)000342986100005 ()oai:bth.se:forskinfoFB147FACF831B239C1257D0000318F07 (Local ID)oai:bth.se:forskinfoFB147FACF831B239C1257D0000318F07 (Archive number)oai:bth.se:forskinfoFB147FACF831B239C1257D0000318F07 (OAI)
Note
Journal of Advanced NursingAvailable from: 2015-01-02 Created: 2014-06-23 Last updated: 2018-08-24Bibliographically approved
4. Befriending Everyday Life When Bringing Technology Into the Private Sphere
Open this publication in new window or tab >>Befriending Everyday Life When Bringing Technology Into the Private Sphere
2017 (English)In: Qualitative Health Research, ISSN 1049-7323, E-ISSN 1552-7557, Vol. 27, no 6, p. 843-854Article in journal (Refereed) Published
Abstract [en]

We present the findings of our phenomenological interview study concerning the meaning of being an autonomous person while dependent on advanced medical technology at home. This was elucidated in the participants' narratives as befriending everyday life when bringing technology into the private sphere. We discovered four constituents of the phenomenon: befriending the lived body, depending on good relationships, keeping the home as a private sphere, and managing time. The most important finding was the overall position of the lived body by means of the illness limiting the control over one's life. We found that the participants wanted to be involved in and have influence over their care to be able to enjoy autonomy. We therefore stress the importance of bringing the patients into the care process as chronic illness will be a part of their everyday life for a long time to come, hence challenging patient autonomy.

Place, publisher, year, edition, pages
SAGE PUBLICATIONS INC, 2017
Keywords
advanced home care, autonomy, decision making, ethics, Giorgi, interviews, phenomenology, qualitative, technology, medical
National Category
Nursing
Identifiers
urn:nbn:se:bth-14198 (URN)10.1177/1049732315627428 (DOI)000400198000008 ()
Available from: 2017-05-22 Created: 2017-05-22 Last updated: 2018-08-24Bibliographically approved

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