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Ways of experiencing the life situation among United States patients with an implantable cardioverter-defibrillator: a qualitative study
Halmstad University, School of Social and Health Sciences (HOS), Centre of Research on Welfare, Health and Sport (CVHI), Group for Research on health promotion and disease prevention.
University of Oslo, Center for Shared Decision Making and Nursing Research, Norway.
University of Massachusetts-Lowell, Lowell, MA, USA.
Massachusetts General Hospital, Boston, MA, USA.
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2005 (English)In: Progress in Cardiovascular Nursing, ISSN 0889-7204, E-ISSN 1751-7117, Vol. 20, no 1, p. 4-10Article in journal (Refereed) Published
Abstract [en]

The purpose of this paper is to describe how a selected group of United States patients with an implantable cardioverter-defibrillator perceived their life situation. A qualitative design based on the phenomenographic approach was chosen to describe the patients' conceptions of their life situation. Fourteen patients-eight men and six women, aged 21-84-were strategically selected to obtain as broad a variation as possible. The descriptive categories to emerge from the analysis of the interviews were trust, adaptability, and empowerment. The category labeled trust describes how patients trusted in the organization around them. The category labeled adaptability describes how patients adapted to living with an implantable cardioverter-defibrillator device. The category entitled empowerment describes how patients considered that they received support from family and friends as well as from health care professionals. This study suggests the need for a holistic intervention program comprising family, work, and leisure, focusing on patients' future life situation.

Place, publisher, year, edition, pages
Hoboken, NJ: Le Jacq Communications , 2005. Vol. 20, no 1, p. 4-10
Keywords [en]
Adaptive behavior, Adult, Aged, Defibrillator, Female, Human, Life event, Male, Middle aged, Psychological aspect, Psychological model, Social support
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hh:diva-3359DOI: 10.1111/j.0889-7204.2005.03797.xPubMedID: 15785164Scopus ID: 2-s2.0-18444403749OAI: oai:DiVA.org:hh-3359DiVA, id: diva2:282058
Available from: 2009-12-18 Created: 2009-12-01 Last updated: 2018-03-23Bibliographically approved
In thesis
1. Caring for Patients with an Implantable Cardioverter Defibrillator Experiences of Patients and Healthcare Professionals
Open this publication in new window or tab >>Caring for Patients with an Implantable Cardioverter Defibrillator Experiences of Patients and Healthcare Professionals
2009 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: An Implantable Cardioverter Defibrillator (ICD) is a technical device used in the treatment of ventricular arrhythmias. After the implantation of an ICD the entire life situation can be affected with psychological and social consequences for the patient and his/her next of kin. The healthcare professionals play a vital role in providing educational information, support, and technical follow-up of the device. During recent years more and more hospitals have introduced a more team based organisation where the physicians collaborate with specialised ICD nurses.

Aim: The overall aim of the thesis was to explore how patients with an ICD experienced their life situation and howhealthcare professionals described their experiences of delivering care to ICD patients.

Methods: The design was descriptive, combining both quantitative and qualitative approaches, and the data was collected from Sweden and the USA. The Uncertainty of Illness Scale (MUIS-C) and Quality of life Index (QLI) instruments were used to determine the level of uncertainty and satisfaction with life (I), in-depth interviews with a phenomenographic approach was used to describe how Swedish and US patients living with an ICD conceived their life situation (II, III) and how healthcare professionals’ experienced delivering care to patients with an ICD, (IV). Finally, to explore clinical aspects of ICD care in Sweden, the Delivery of ICD Questionnaire (DOIQ) was used to describe the healthcare professionals’ experiences and a content analysis was used to describe the written educational information material provided to patients (V).

Results: There were no differences in uncertainty between pre and post ICD implantation either in Swedish or the US patients. Satisfaction with life was significantly higher among US patients compared to Swedish patients both before and after ICD implantation within the health-functioning, socio-economic and psychological-spiritual domains. The Swedish ICD patients experienced a significantly higher satisfaction with life within the socioeconomic domain after 3 months. (I). The patients felt safe in having an ICD implanted, but the conceptions varied from seeing the device as a life saver to being worried about what could happen. Gratitude at having an ICD varied from happiness at being alive to something that was alien and disturbed the patient. Being more or less dependent included how patient experienced feelings from well-being to grief. Having a network varied from having sufficient support to loneliness. Having a belief in the future ranged from having confidence to look forward to resignation. Gaining awareness described patients’ adaptation to living with an ICD and limitations due to the ICD (II). The patients also underwent a transition from becoming aware of the restriction in the life situation through a process of adaption and having trust in the ICD. This phase was followed by a reorientation phase where they adapted to their life situation and the patient and his/her family regained of their lives (III). The healthcare professionals strove to provide competent and individualised care and infuse confirmation to the patients in form of information, education and support. They gave the patients tools to handle their life situation, through existential support and mediating security (IV). Half of the hospitals had nurse-based clinic and others planned to introduce them. Three hospitals performed follow-up in the form of remote home monitoring. The nurse had specific ICD education from ICD companies and/or various university courses. In the educational information material the biophysical dimensions dominated while the emotional dimension was scarcely described, and the spiritual-existential was not referred to at all (V).

Conclusions: This thesis offers a further contribution to the scholarly discussion about the relationship between technology and human existence and how to cope with this transition. Our studies revealed that the embodiment of the ICD reflects a merger of experiences about its presence and potential from both patients’ and healthcare professionals’ perspective. This research hopefully encourages healthcare professionals to carefully reflect on what it is like to live with an ICD and to consider practice improvement for the patients’ and the next of kin.

Place, publisher, year, edition, pages
Linköping: Department of Medical and Health Sciences, Linköping University, 2009. p. 58
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1142
Keywords
ICD-implantation, healthcare professional, life situation, organisation of care, experiences, satisfaction, uncertainty, clinical aspects, heart diseases, patient satisfaction, quality of life, health personnel, hjärtsjukdomar, patienttillfredsställelse, livskvalitet, sjukvårdspersonal
National Category
Nursing
Identifiers
urn:nbn:se:hh:diva-5797 (URN)978-91-7393-568-5 (ISBN)
Supervisors
Available from: 2010-09-17 Created: 2010-09-16 Last updated: 2018-03-23Bibliographically approved
2. Living with an implantable cardioverter defibrillator: Swedish and US patients' experiences of their life situation
Open this publication in new window or tab >>Living with an implantable cardioverter defibrillator: Swedish and US patients' experiences of their life situation
2004 (English)Licentiate thesis, comprehensive summary (Other academic)
Place, publisher, year, edition, pages
Linköping: Linköping University, 2004. p. 41
Series
Linköping studies in health sciences, ISSN 1100-6013 ; 66
Keywords
CHD, ICD-implantation, MUIS, life situation, QLI, Quality of life, phenomenography, satisfaction, uncertainty, Implantable defibrillators
National Category
Cardiac and Cardiovascular Systems
Identifiers
urn:nbn:se:hh:diva-600 (URN)2082/942 (Local ID)91-7373-843-3 (ISBN)2082/942 (Archive number)2082/942 (OAI)
Note

Avhandlingen ingår även i Omvårdnadsforskning vid Hälsouniversitetet i Linköping, 1101-475X ;12

Available from: 2007-04-10 Created: 2007-04-10 Last updated: 2018-03-23Bibliographically approved

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