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Living with life-saving technology: Long-term follow up of recipients with implantable cardioverter defibrillator
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]

The evidence that treatment of life-threatening arrhythmia (LTA) with an Implantable Cardioverter Defibrillator (ICD) can prolong life is convincing. Living with a lifelong heart disease will gradually influence the everyday life and encompasses some or all aspects of life. In order to influence health outcomes, the impact of the ICD must be considered in a broader context including not only the physical, but also the psychological and social functioning of the individual.

The general aim of this thesis was to describe everyday life in recipients living with an ICD in a longterm perspective. The aim in Paper I was to describe changes in the life situation of recipients’ with an ICD over a period of 1 year. The aim in Paper II was to describe quality of life (QOL) and uncertainty in recipients who have an ICD and to predict QOL at long-term follow-up. Fifty-six recipients participated (I) and 35 of these recipients, who had survived at least five years, were further included (II). The Quality of Life Index-Cardiac version (I, II), Mishel Uncertainty in Illness Scale-Community version (I, II), Patient ICD Questionnaire (I) and multiple regression analysis (II) were used. Higher scores indicate higher QOL and uncertainty. The questionnaires were completed before implantation, three and twelve months after implantation (I) and also five years after implantation i.e. long-term follow up (II). At the long-term follow up, the average ICD recipient had lived with an ICD for six years and nine months (6.9 years). The results showed the overall QOL and QOL in the health/functioning domain were unchanged over time. QOL in the socio-economic (p= .002) and psychological/spiritual domains (p= .012) decreased in the first year. From baseline to long-term follow up, the QOL in the family domain (p= .011) and overall uncertainty (p= .002) decreased. Uncertainty related to the information decreased at year 1 in relation to baseline (p= .001).

The aim in Paper III was to illuminate the main concern of recipients living with an ICD and how they handle this in their daily life. Sixteen recipients who had lived with an ICD between six to twenty-four months were interviewed. Data was collected and analysed in a simultaneous process according to guidelines for classical grounded theory. In the analysis, a substantive theory was generated explaining the main concern of ICD recipients and how they handle this in their daily life. The core category, labelled “Striving to resume command”, illuminates the main concern of ICD recipients. To manage this main concern, the recipients used the following strategies: Economizing resources, Distracting oneself, Submitting to one’s fate and Re-evaluating life.

The aim in Paper IV was to explore relationships between OQL, coping strategies, anxiety, depression and perceived control in recipients living with an ICD and to compare those having received an ICD less or more than one year ago and those with a primary or secondary preventive indication. A cross-sectional, correlational, multicenter design was used, and 147 recipients who had lived with an ICD between six to twenty-four months completed Quality of Life Index-Cardiac version, Jalowiec Coping Scale, Hospital Anxiety and Depression Scale and Control Attitude Scale. The results showed that anxiety, depression and perceived control were predictors of QOL. Anxiety was also a predictor of coping with optimistic coping being the most used coping strategy. There was no relationship between QOL and coping. No differences were found in QOL, coping, anxiety, depression and perceived control between recipients implanted either on a primary or secondary preventive indication or having the device less or more than one year.

In this thesis, it was concluded that the ICD recipients strived to resume command over their life (III) and the more control the recipients perceived the more satisfied they were with their QOL (IV) and the more symptoms of anxiety, depression and uncertainty they experienced the less satisfied they were with their QOL (II, IV). Coping strategies were used more frequently by ICD recipient perceiving more anxiety (IV). QOL was fairly good 6,9 years after implantation and ICD recipients felt less uncertain once they had passed the first year of their illness.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press , 2009. , 61 p.
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1116
Keyword [en]
Anxiety, arrhythmia, defibrillators, depression, grounded theory, perceived control, qualitative, quality of life, uncertainty
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-18524ISBN: 978-91-7393-654-5 (print)OAI: oai:DiVA.org:liu-18524DiVA: diva2:220153
Public defence
2009-05-28, Berzeliussalen, Campus US, Linköpings Universitet, Linköping, 13:00 (English)
Opponent
Supervisors
Available from: 2009-05-29 Created: 2009-05-29 Last updated: 2013-09-03Bibliographically approved
List of papers
1. Life situation of patients with an implantable cardioverter defibrillator: a descriptive longitudinal study
Open this publication in new window or tab >>Life situation of patients with an implantable cardioverter defibrillator: a descriptive longitudinal study
Show others...
2001 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 10, no 4, 563-572 p.Article in journal (Refereed) Published
Abstract [en]

• The aim of this study was to describe changes in the life situation of patients with an implantable cardioverter defibrillator over a period of 1 year. A sample of 56 consecutive patients took part in the study.

•  Life situation was measured through uncertainty in illness, satisfaction, and fear of the life situation. Descriptive statistics were used to present results, and analytical statistics were used to map out changes over time.

• Overall uncertainty showed a decrease over time. A statistically significant difference was found within the domain uncertainty related to information (P < 0.001).

• Satisfaction increased within the domains health-functioning, socio-economic, psychological–spiritual, and family.

• The ability to act within the domain health-functioning showed a statistical significance (P < 0.05).

• The domain life changes within fear in the life situation decreased and showed a statistical significance (P < 0.05).

• The overall life situation showed increased satisfaction as well as lower uncertainty and fear in the life situation.

•  The research indicates that patients need more information about changes in the life situation after the implantable cardioverter defibrillator-implantation. The study encourages more humanistic, holistic research about patients’ life situations as well as more education in teaching skills for health care personnel.

Keyword
Implantable cardioverter defibrillator, patient experiences, uncertainty, information, satisfaction
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-18520 (URN)10.1046/j.1365-2702.2001.00494.x (DOI)000169890600020 ()11822504 (PubMedID)
Available from: 2009-05-29 Created: 2009-05-29 Last updated: 2017-12-13Bibliographically approved
2. Long-term quality of life and uncertainty in patients living with an implantable cardioverter defibrillator
Open this publication in new window or tab >>Long-term quality of life and uncertainty in patients living with an implantable cardioverter defibrillator
Show others...
2005 (English)In: Heart & Lung, ISSN 0147-9563, E-ISSN 1527-3288, Vol. 34, no 6, 386-392 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE: This study describes the quality of life (QOL) and uncertainty in patients who have an implantable cardioverter defibrillator (ICD) and predicts QOL at long-term follow-up.

METHODS: Long-term follow-up was defined as 6.9 years +/- 1 year (range 4.11-8.7 years). QOL was measured with the Quality of Life Index, and uncertainty was measured with the Mishel Uncertainty in Illness Scale.

RESULTS: The overall QOL and health/functioning were unchanged over time. QOL in the socioeconomic (P = .002) and psychologic/spiritual domains (P = .012) decreased in the first year. From baseline to long-term follow-up, the QOL in the family domain (P = .011) and uncertainty (P = .002) decreased. Uncertainty was a predictor of low QOL.

CONCLUSION: QOL was reasonably good 6.9 years post-ICD implantation. Patients felt less uncertain once they had passed the first year of their illness.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-18521 (URN)10.1016/j.hrtlng.2005.05.003 (DOI)16324957 (PubMedID)
Available from: 2009-05-29 Created: 2009-05-29 Last updated: 2017-12-13Bibliographically approved
3. "Striving to resume command" - main concern for recipients of implantable cardioverter defibrillator
Open this publication in new window or tab >>"Striving to resume command" - main concern for recipients of implantable cardioverter defibrillator
2009 (English)Article in journal (Other academic) Submitted
Abstract [en]

Background: Earlier studies have shown that individuals with implantable cardioverter defibrillator (ICD) experience fear, stress, anxiety, and depression in their daily life, but also feelings of gratitude, safety, and belief in the future. Uncertainty and restrictions in physical, psychological and social functioning are common responses to their experiences. Aim: The aim of the study was to illuminate the main concern of individuals living with an ICD and how they handle this in their daily life.

Method: Sixteen Swedish recipients (9 men) who had lived with a defibrillator for 6 to 24 months were interviewed during 2007. Data was collected and analyzed in a simultaneous process according to guidelines for classical grounded theory.

Results: In the analysis, a substantive theory was generated explaining the main concern of ICD recipients and how they handle this in their daily life. The core category, labelled “Striving to resume command” illuminates the main concern of ICD recipients. To manage this main concern, the recipients used the following strategies: Economizing resources, Distracting oneself, Submitting to one’s fate and Re-evaluating life.

Conclusions: Based on empirical data, a substantive theory was generated illuminating the main concern for ICD recipients and strategies they used to manage this in daily life. The theory deepens the understanding of the recipients´ striving to resume command over their lives in an ongoing adjustment process which they have to face. This knowledge has clinical relevance and suggests that nurses should support the ICD recipients in this respect and thereby contribute to optimizing their sense of control in daily life. Future research could focus on the role of family members of ICD recipients and in what way they can support rather than overprotect their closely related.

Keyword
Defibrillators, implantable, heart diseases, nursing, qualitative research, quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-18522 (URN)
Available from: 2009-05-29 Created: 2009-05-29 Last updated: 2013-09-03Bibliographically approved
4. Quality of life and coping strategies in recipients with an implantable cardioverter defibrillator
Open this publication in new window or tab >>Quality of life and coping strategies in recipients with an implantable cardioverter defibrillator
2009 (English)Article in journal (Other academic) Submitted
Abstract [en]

Objectives: To explore relationships between quality of life (QOL), coping strategies, anxiety, depression and perceived control in recipients living with an implantable cardioverter defibrillator (ICD) and compare those having received an ICD less or more than one year ago and those with a primary or secondary preventive indication.

Methods: A cross-sectional, correlational design was used, and 147 individuals (mean age 63 years, 121 men) who had lived with an ICD between 6 to 24 months completed Quality of Life Index-Cardiac version, Jalowiec Coping Scale, Hospital Anxiety and Depression Scale and Control Attitude Scale.

Results: Anxiety, depression and perceived control were predictors of QOL. Anxiety was also a predictor of the use of coping strategies with optimism being the most used coping strategy. No relationship was found between QOL and the use of different coping strategies. No differences were found in QOL, coping, anxiety, depression and perceived control between ICD recipients having the device less or more than one year and treated either on a primary or secondary preventive indication.

Conclusions: Recipients with an ICD did not use a multitude of coping strategies, but anxiety increased the use of coping. Perceived control was the most influential predictor of QOL. Practice implications: Supportive long term follow up interventions should be tailored to the recipients that have problems adapting to the device and perceive poor control in everyday life and a decreased psychological well-being.

Keyword
Anxiety, arrhythmia, defibrillators, depression, perceived control, quality of life
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:liu:diva-18523 (URN)
Available from: 2009-05-29 Created: 2009-05-29 Last updated: 2013-09-12Bibliographically approved

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