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Caring for patients with an Implantable Cardioverter Defibrillator: Experiences of patients and healthcare professionals
Linköping University, Department of Medicine and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
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: Linköping University Electronic Press , 2009. , 58 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1142
Keyword [en]
ICD-implantation, healthcare professional, life situation, organisation of care, experiences, satisfaction, uncertainty, clinical aspects
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-51808ISBN: 978-91-7393-568-5 (print)OAI: oai:DiVA.org:liu-51808DiVA: diva2:277460
Public defence
2009-10-30, Berzeliussalen, ingång 65, Campus US, Linköpings Universitet, Linköping, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2009-11-23 Created: 2009-11-18 Last updated: 2013-09-12Bibliographically approved
List of papers
1. Life situation related to the ICD implantation: self-reported uncertainty and satisfaction in Swedish and US samples
Open this publication in new window or tab >>Life situation related to the ICD implantation: self-reported uncertainty and satisfaction in Swedish and US samples
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2002 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 1, no 4, 243-251 p.Article in journal (Refereed) Published
Abstract [en]

The aim of the study was to describe changes in the life situation related to the ICD implantation of Swedish and US samples with regard to uncertainty and satisfaction. The life situation was measured by reference to the uncertainty caused by the condition and satisfaction with the life situation. Inferential statistics were used to analyse changes within and between the Swedish and US samples. Uncertainty showed a statistically significant difference between the Swedish and US samples before as well as after the ICD implantation. A higher level of uncertainty was indicated for the US sample prior to the ICD implantation and for the Swedish sample following the implantation. In the Swedish sample, satisfaction with life showed a statistically significant difference within the socio-economic domain, indicating a higher degree of satisfaction 3 months after implantation. Satisfaction within the domains of health and functioning, socio-economics and psychological-spiritual showed a statistically significant difference between the Swedish and US samples both before and after ICD implantation, indicating a higher degree of satisfaction in the US sample. The previous study shows that the ICD-patient's life situation is changed after the implantation and that it is necessary to provide the patient with information and education based on their own preconditions. The fact that US sample was investigated at a later stage after ICD implantation than the Swedish sample may have influenced the results of the study.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-26818 (URN)10.1016/S1474-5151(02)00048-8 (DOI)11431 (Local ID)11431 (Archive number)11431 (OAI)
Available from: 2009-10-08 Created: 2009-10-08 Last updated: 2017-12-13Bibliographically approved
2. Patients with implantable cardioverter-defibrillators and their conceptions of the life situation: a qualitative analysis
Open this publication in new window or tab >>Patients with implantable cardioverter-defibrillators and their conceptions of the life situation: a qualitative analysis
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2000 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 9, no 1, 37-45 p.Article in journal (Refereed) Published
Abstract [en]

• The implantable cardioverter-defibrillator (ICD) is today widely used for the treatment of sudden cardiac near-death episodes as a result of malignant ventricular dysrhythmia.

• After examining the literature, only four descriptive studies, all carried out in the USA, with a qualitative analysis based on ICD-patients’ own perspectives on their life situation have been found.

•  The aim of this study was to describe how patients living with an ICD-device in south-western Sweden conceive their life situation.

•  As the focus was on patients’ conceptions seen from a holistic perspective, an analysis inspired by phenomenography was employed on a strategic sample of 15 ICD-patients.

• Six categories emerged: a feeling of safety, a feeling of gratitude, a feeling of being, having a network, having a belief in the future, and gaining awareness.

• Although the findings cannot be generalized because of the descriptive research design, they illuminate the beneficial as well as intrusive effects of such a device, and emphasize the need for support groups for patients and families as well as further education for personnel in hospital and primary health care.

Keyword
Coronary heart disease, implantable cardioverter de®brillator, life situation, phenomenography, qualitative analysis
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-51799 (URN)10.1046/j.1365-2702.2000.00335.x (DOI)
Available from: 2009-11-18 Created: 2009-11-18 Last updated: 2017-12-12Bibliographically approved
3. Ways of Experiencing the Life Situation Among United States Patients With an Implantable Cardioverter-Defibrillator: A Qualitative Study
Open this publication in new window or tab >>Ways of Experiencing the Life Situation Among United States Patients With an Implantable Cardioverter-Defibrillator: A Qualitative Study
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2004 (English)In: Progress in Cardiovascular Nursing, ISSN 0889-7204, E-ISSN 1751-7117, Vol. 20, no 1, 4-10 p.Article 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
Wiley InterScience, 2004
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-51802 (URN)10.1111/j.0889-7204.2005.03797.x (DOI)
Available from: 2009-11-18 Created: 2009-11-18 Last updated: 2017-12-12Bibliographically approved
4. Experiences of delivering care to patients with an Implantable Cardioverter Defibrillator from the perspective of health care professionals
Open this publication in new window or tab >>Experiences of delivering care to patients with an Implantable Cardioverter Defibrillator from the perspective of health care professionals
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Objective: To describe healthcare professionals’ experiences of delivering care to patients with an Implantable Cardioverter Defibrillator (ICD).

Methods: A qualitative, descriptive design based on a phenomenographic approach. Data was collected between October and December 2007 through interviews with 24 healthcare professionals representing all 16 implanting ICD centres in Sweden.

Results: Two descriptive categories comprising seven subcategories emerged. Striving to provide competent care comprised: providing access to care, improving one’s quantifications, individualising care and Striving to infuse confirmation involved: promoting independence providing existential support, mediating security and comprising needs of next of kin.

Conclusion: The healthcare professional striving to provide competent and confirming care based on a holistic perspective. The results describe a variation of how healthcare professionals’ strive to be professional in clinical care in order to give the patient tools to handle their life situation.

Practice Implications: The findings from healthcare professionals’ experiences can complement studies from the patients’ perspective and are important when improving care or ICD patients. This study can serve as a base for developing and redefining holistic follow-up programmes for ICD patients.

Keyword
Education, follow up, Implantable Cardioverter Defibrillator, organisation of care, phenomenography
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-51805 (URN)
Available from: 2009-11-18 Created: 2009-11-18 Last updated: 2013-09-12Bibliographically approved
5. Organisation of care for Swedish patients with an Implantable Cardioverter Defibrillator, a national survey
Open this publication in new window or tab >>Organisation of care for Swedish patients with an Implantable Cardioverter Defibrillator, a national survey
2011 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 20, no 17-18, 2600-2608 p.Article in journal (Refereed) Published
Abstract [en]

Aim: To describe the clinical aspects of Implantable Cardioverter Defibrillators (ICD) care in Sweden with focus on organisation, the role and education of nurses, patient information and education, and areas in need of improvement.

Background: ICD implantations have developed rapidly in recent years and is now an established arrhythmia treatment. The expanding indication for ICD implantation demands new competencies and resources in the ICD team members.

Methods: Participants were recruited among physicians and nurses in all of the hospitals implanting ICDs (N=16). Data was collected by a questionnaire. Additionally, all written educational materials provided to patients pre- and post-implant were collected from all 16 hospitals. Deductive content analysis using Sarvimäki and Stenbock-Hult’s five holistic dimensions was employed to ascertain how information was provided in brochures and information materials.

Results: Half of the hospitals (n=8) had nurse-based outpatient clinics and several others planned to introduce them. Three hospitals carried out distance follow-ups by means of telemonitoring. The nurses had received specific ICD education from ICD companies and/or various university courses. The biophysical dimension dominated in the information material while the emotional, intellectual, and socio-cultural dimensions were scarcely described, and the spiritual- existential was not referred to at all.

Conclusion: Holistic care of ICD patients can be achieved by means of a multi-disciplinary ICD team and more patient-centred educational strategies. In Sweden, the organisation of ICD care and follow-up is developing towards more nurse-based clinics.

Relevance to clinical practice: Development and implementation of structured care programmes with a more holistic approach, can improve future ICD care. The content of the written educational materials need to be more holistic, rather than mainly focusing on the biophysical and technical aspects of living with an ICD.

Place, publisher, year, edition, pages
Blackwell Publishing, 2011
Keyword
Implantable Cardioverter Defibrillator, care, nursing, organisation, follow-up, patient education
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-51807 (URN)10.1111/j.1365-2702.2010.03540.x (DOI)000293748900024 ()
Note
Funding agency|School of Social and Health Sciences, Halmstad University||Department of Medicine and Health Sciences, Division of Nursing Science, Linkoping University||Available from: 2009-11-18 Created: 2009-11-18 Last updated: 2017-12-12Bibliographically approved

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