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From Novice Towards Self-Care Expert: Studies of self-care among persons using advanced medical technology at home
Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
2010 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The use of advanced medical technology at home has increased in most industrialized countries. The overall aim of this thesis was to develop knowledge of self-care and transition and issues that influence daily life and health among persons using advanced medical technology at home.

Three qualitative studies were performed to describe the structure of self-care (I) and elucidate meanings of health-illness transition experiences among persons using long-term oxygen, or a ventila-tor, or performing blood or peritoneal dialysis (II), and to gain a deeper understanding of the meaning of living with an adult family member in this context (III). Ten interviews with adult patients (I-II) and ten with adult next of kin (III) in this context were performed and analysed with descriptive phenome-nological (I), phenomenological hermeneutical (II) and hermeneutical (III) methods. A quantitative, descriptive, comparative, cross-sectional design was used to describe and find factors that influence self-care agency and perceived health in a larger group of persons (180 patients) using the enumerated types of advanced medical technology at home (IV).

In the results, (I) self-care among persons using long-term oxygen, a ventilator, or equipment for blood or peritoneal dialysis at home was described at a generic level, independent of the specific type of technology used. The general description of self-care in this context involved prerequisites for, activities for and consequences of self-care; (II) the health-illness transition among adult persons in this context was interpreted as contentment at being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The successful and healthy transition experience was characterized by human growth and becoming; (III) living with a family member who is using advanced medical technology at home was interpreted as meaning rhythmical patterns of being closely connected to but also separated from him or her, and of sorrow versus reconciliation. Dependence on others was reflected in a need for support from the healthcare professionals and significant others; (IV) health-related and technology-related variables in daily life were rated as satisfactory to quite a high extent, but participants using long-term oxygen perceived their health as significantly lower compared to the other technology groups. Further, a significant difference in sense of coherence was found between users of long-term oxygen and peri-toneal dialysis. Factors that contributed to self-care agency and sense of coherence were found.

In conclusion, self-care in a high-tech home context means more than simply mastering the technology. With the goal of maintaining an active, social life, the health-illness transition involves a learning process of accepting and integrating the technology into daily life. With knowledge and support, patients and next of kin are able to assume substantial responsibility for self-care/dependent-care. Daily life seems to be manageable for patients using this kind of technology at home.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2010. , 54 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1207
Keyword [en]
Dependent-care, health, hermeneutics, home dialysis, home ventilator, long-term oxygen, next of kin, phenomenology, transition
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-63742ISBN: 978-91-7393-313-1 (print)OAI: oai:DiVA.org:liu-63742DiVA: diva2:382687
Public defence
2010-12-15, Berzeliussalen, Campus US, Linköpings universitet, Linköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2011-01-03 Created: 2011-01-03 Last updated: 2011-01-03Bibliographically approved
List of papers
1. Self-care among persons using advanced medical technology at home
Open this publication in new window or tab >>Self-care among persons using advanced medical technology at home
2009 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 18, 2809-2817 p.Article in journal (Refereed) Published
Abstract [en]

Aim. This study aimed to describe lived experiences of self-care among persons using advanced medical technology at home.

Background. An increased number of people are performing self-care while using different sorts of advanced medical technology at home. Knowledge of different patient groups' lived experiences of this situation may be useful for nurses and other caregivers in educating and supporting these patients.

Design. A qualitative design was used.

Methods. Suitable patients in western Sweden were informed by their nurses and invited to participate. Ten people, who performed self-care at home, either while using long-term oxygen therapy from a ventilator or oxygen cylinder, or while performing peritoneal or haemodialysis, were interviewed. The interviews were analysed using a descriptive phenomenological methodology.

Results. Prerequisites for self-care when using advanced medical technology at home were: support from professional caregivers and significant others; cognitive capacity; and a positive attitude to life. This type of self-care contains steps for living healthy, for planning and for adjusting technology. It involves a process of learning and feelings both of being tied up and of feeling free. Additionally, it has influences on the home environment.

Conclusion. Self-care in this context can be described on a generic level. Self-care is more than mastering the technology; it also means dealing with daily life activities for healthy living, planning for the use of the equipment and activities, having knowledge about bodily signs of good and ill-health, and adjusting treatment according to the circumstances.

Relevance to clinical practice. Self-care in this context involves a learning process with education and continuing access to support from professional caregivers. With knowledge and support, patients are able to assume substantial responsibility for self-care. Needs for design improvements of medical technology for use at home are raised.

Place, publisher, year, edition, pages
Blackwell Publishing Ltd, 2009
Keyword
high-tech care • lived experience • nurses • nursing • Orem • phenomenology
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-20891 (URN)10.1111/j.1365-2702.2009.02861.x (DOI)
Available from: 2009-09-24 Created: 2009-09-24 Last updated: 2017-12-13
2. Health-illness transition among persons using advanced medical technology at home
Open this publication in new window or tab >>Health-illness transition among persons using advanced medical technology at home
2011 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 25, no 2, 253-261 p.Article in journal (Refereed) Published
Abstract [en]

Scand J Caring Sci; 2010 Health-illness transition among persons using advanced medical technology at home. This study aimed to elucidate meanings of health-illness transition experiences among adult persons using advanced medical technology at home. As an increasing number of persons perform self-care while using different sorts of advanced medical technology at home, knowledge about health-illness transition experiences in this situation may be useful to caregivers in supporting these patients. A qualitative design was used. Five women and five men, all of whom performed self-care at home, either using long-term oxygen therapy from a ventilator or oxygen cylinder, or performing peritoneal or haemodialysis, were interviewed. Ethics committee approval was obtained. Informed consent was received from all participants, and ethical issues concerning their rights in research were raised. The interviews were analysed using a phenomenological hermeneutical methodology, including both an inductive and a deductive structural analysis. This method offers possibilities to obtain an increased understanding by uncovering a deeper meaning of lived experiences through interviews transcribed as texts. The health-illness transition for adult persons in this context was found to mean a learning process of accepting, managing, adjusting and improving daily life with technology, facilitated by realizing the gain from technology at home. Further, the meaning of the health-illness transition experience was interpreted as contentment with being part of the active and conscious process towards transcending into a new state of living, in which the individual and the technology were in tune. The healthy transition experience was characterized by human growth and becoming. This study elucidates one meaning of health-illness transition experiences in relation to the use of advanced medical technology on a more generic level, independent of the specific type of technology used. A positive attitude towards technology at home facilitates the transition.

Place, publisher, year, edition, pages
Blackwell, 2011
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-63739 (URN)10.1111/j.1471-6712.2010.00820.x (DOI)000290589300007 ()20718935 (PubMedID)
Note
This is the pre-reviewed version of the following article: Angelika Fex, Gullvi Flensner, Anna-Christina Ek and Olle Söderhamn, Health-illness transition among persons using advanced medical technology at home, 2011, Scandinavian Journal of Caring Sciences, (25), 2, 253-261. which has been published in final form at: http://dx.doi.org/10.1111/j.1471-6712.2010.00820.x Copyright: Blackwell Publishing Ltd http://eu.wiley.com/WileyCDA/Brand/id-35.html Available from: 2011-01-03 Created: 2011-01-03 Last updated: 2017-12-11
3. Living with an adult family member using advanced medical technology at home
Open this publication in new window or tab >>Living with an adult family member using advanced medical technology at home
2011 (English)In: Nursing Inquiry, ISSN 1320-7881, E-ISSN 1440-1800, Vol. 18, no 4, 336-347 p.Article in journal (Refereed) Published
Abstract [en]

An increased number of chronically ill adults perform self-care while using different sorts of advanced medical technology at home. This hermeneutical study aimed to gain a deeper understanding of the meaning of living with an adult family member using advanced medical technology at home. Eleven next of kin to adults performing self-care at home, either using long-term oxygen from a cylinder or ventilator, or performing peritoneal or haemodialysis, were interviewed. The qualitative interviews were analysed using a Gadamerian methodology. The main interpretation explained the meaning as rhythmical patterns of connectedness versus separation, and of sorrow versus reconciliation. Dependence on others was shown in the need for support from health-care professionals and significant others. In conclusion, next of kin took considerable responsibility for dependent-care. All next of kin were positive to the idea of bringing the technology home, even though their own needs were receded into the background, while focusing on the best for the patient. The results were discussed in relation to dependent-care and transition, which may have an influence on the self-care of next of kin and patients. The study revealed a need for further nursing attention to next of kin in this context.

Place, publisher, year, edition, pages
Blackwell Publishing, 2011
Keyword
Dependent-care; Next of kin; Orem; Self-care; Transition
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-63740 (URN)10.1111/j.1440-1800.2011.00535.x (DOI)000297471100007 ()
Available from: 2011-01-03 Created: 2011-01-03 Last updated: 2017-12-11Bibliographically approved
4. Self-Care Agency and Perceived Health Among Persons Using Advanced Medical Technology at Home
Open this publication in new window or tab >>Self-Care Agency and Perceived Health Among Persons Using Advanced Medical Technology at Home
2012 (English)In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 68, no 4, 806-815 p.Article in journal (Refereed) Published
Abstract [en]

Aim. This paper is a report of a study of self-care agency and perceived health in a group ofpersons using advanced medical technology at home.

Background. An increasing number of persons are using medical technology for self-care. Few studies describe daily life in this context at an overriding level, irrespective of the specific sort of technology. A connection between self-care, perceived health and sense of coherence has previous been implied.

Methods. A descriptive, comparative, cross-sectional quantitative design was used. Data were collected from a questionnaire in the winter 2009/2010. The questionnaire addressed perceiveed health and daily life with medical technology, and applied Swedish versions of the Appraisal of Self-care Agency scale and the 13-item version of Antonovsky’s sense of coherence scale.

Results. The questionnaire was answered by 180 adults performing self-care at home involving long-term oxygen, a ventilator, peritoneal or blood dialysis. Health-related and technology-related variables in daily life were rated as satisfactory to a high extent. Perceived health was rated significantly lower among participants using long-term oxygen. Sufficient sense of coherence and knowledge of how to use technology, close contacts with other persons, and not feeling helpless contributed positively as factors for self-care agency. Positive factors for perceived health were being satisfied with life, having an active life, and not feeling helpless, while age was a negative factor.

Conclusion. Daily life is manageable for persons using these types of technology. Long-term oxygen treatment and advanced age can be seen as risk factors for perceiving ill health.

Keyword
Appraisal of self-care agency scale, high-tech care; home ventilator; home dialysis; long-term oxygen; nursing; sense of coherence
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-63741 (URN)10.1111/j.1365-2648.2011.05781.x (DOI)000301426000009 ()
Note
Funding Agencies|Department of Nursing, Health and Culture, University West||Division of Nursing Science, Department of Medicine and Health Sciences, Faculty of Health Sciences, Linkoping University||University of Agder||University West, Sweden||University of Agder, Norway||Available from: 2011-01-03 Created: 2011-01-03 Last updated: 2017-12-11Bibliographically approved

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