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Hope and life-struggle: patients' experiences with Transcatheter Aortic Valve Implantation
Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine. Umeå University, Faculty of Medicine, Department of Nursing.
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis is to explore experiences and self-reported outcomes from Transcatheter Aortic Valve Implantation, TAVI, among people with severe aortic stenosis. The thesis includes four studies. Study I-II are based on interviews performed the day before TAVI and Qualitative Concept Analysis was used for analysis. Study III is based on interviews at six months’ follow-up and Grounded Theory was used for analysis. Study IV is quantitative and based on questionnaires at baseline and at six months’ follow-up. Nonparametric, descriptive statistics were used for the analysis.

Study I described the vulnerable situation for patients with severe aortic stenosis before TAVI. They were facing death and at the same time struggling to cope with their symptoms and to maintain independent. TAVI offered hope but also caused uncertainty about the new method.

Study II focused on the patients’ decision-making process. Three patterns were identified; ambivalent, obedient, and reconciled. The ambivalent patient is unsure of the value of treatment and aware of the risks; the obedient patient is unsure of the value of one's own decision and wants to leave the decision to others; the reconciled patient has reached a point where there is no choice anymore and is always sure that the decision to undergo TAVI is right.

Study III offered a deeper understanding of the TAVI trajectory. A journey of balancing between hope and life-struggle was the core category of the analysis. Before TAVI patients felt threatened, but also experienced hope. The rehabilitation phase was described as demanding and depressing or surprisingly simple. At the six months’ followup patients described being pleased to return to life, however, many were still struggling with limitations.

Study IV focused on quantifying the symptom burden, function and health related quality of life before and after TAVI. The results were reflected against that of patients treated with open surgery. Self-rated function and health related quality of life increased and symptoms were reduced at follow-up, but breathlessness and fatigue were still common.

Conclusively, TAVI patients are struggling with limitations, both because of their comorbidities and because of their valve disease which also poses a threat to their lives. TAVI gives an opportunity to survive, to stay independent and to increase quality of life. To feel and preserve hope is essential for patients’ wellbeing, both before and during the recovery process.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2016. , 49 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1850
Keyword [en]
Aortic stenosis, transcatheter aortic valve implantation, experiences, coping, decision-making, health-related quality of life, symptoms, function
National Category
Nursing
Research subject
Caring Sciences
Identifiers
URN: urn:nbn:se:umu:diva-127873ISBN: 978-91-7601-569-8 (print)OAI: oai:DiVA.org:umu-127873DiVA: diva2:1048619
Public defence
2016-12-16, Aulan, Vårdvetarhuset, Umeå, 12:00 (Swedish)
Opponent
Supervisors
Available from: 2016-12-12 Created: 2016-11-20 Last updated: 2016-12-12Bibliographically approved
List of papers
1. Experiences of and Coping With Severe Aortic Stenosis Among Patients Waiting for Transcatheter Aortic Valve Implantation
Open this publication in new window or tab >>Experiences of and Coping With Severe Aortic Stenosis Among Patients Waiting for Transcatheter Aortic Valve Implantation
2016 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 31, no 3, 255-261 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Aortic stenosis (AS) is the most common valve disease in Western countries. Transcatheter aortic valve implantation (TAVI) has made it possible to treat patients with higher surgical risks. These patients are informed about their poor prognosis with only months or a few years to live without treatment. Because of their severe symptoms, limitations, and suffering, patients awaiting TAVI need special attention.

OBJECTIVE: The aim of this study is to describe patients' experiences of coping with severe AS and of waiting for TAVI.

METHODS: Swedish participants (n = 24; 9 women, 15 men) with a mean (SD) age of 80 (7.4) years who had been offered TAVI all agreed to participate in a presurgical interview. The interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis.

RESULTS: The participants' experiences of coping with AS and awaiting TAVI were described by the main theme "living on the edge, but trying to stay in control," which comprised 3 categories: "trying to cope with physical symptoms and anxiety," "trying to preserve self and self-esteem despite life-threatening illness," and "trying to process the decision to undergo TAVI."

CONCLUSIONS: Patients with AS and awaiting TAVI must cope with increasing symptoms and limitations in their social lives but still wish to be seen as the people they always have been. These patients may need extra support from healthcare personnel to process their experiences, which could help them to attach personal meaning to clinical information about the condition and its treatment that they could include in their decision about whether to undergo TAVI. Listening to patients' stories could help nurses and physicians to ensure that disease and treatment are meaningfully understood by the patient.

Keyword
aortic stenosis, coping, experiences, symptoms, transcatheter aortic valve implantation
National Category
Cardiac and Cardiovascular Systems
Identifiers
urn:nbn:se:umu:diva-120742 (URN)10.1097/JCN.0000000000000231 (DOI)000375047600011 ()25658189 (PubMedID)
Available from: 2016-05-20 Created: 2016-05-19 Last updated: 2016-11-21Bibliographically approved
2. Patients' Decision Making About Undergoing Transcatheter Aortic Valve Implantation for Severe Aortic Stenosis
Open this publication in new window or tab >>Patients' Decision Making About Undergoing Transcatheter Aortic Valve Implantation for Severe Aortic Stenosis
2016 (English)In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 31, no 6, 523-528 p.Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Aortic stenosis is the most common valve disease in Western countries, and its prevalence is increasing because of the aging population. Some patients, denied surgery because of high risk, can be offered transcatheter aortic valve implantation (TAVI). These patients are old and have comorbidities, and it is not always easy for them to make the decision about accepting TAVI.

OBJECTIVE: The aim of this study was to describe the decision-making process about undergoing TAVI treatment among people with severe aortic stenosis who are denied surgery.

METHODS: The Swedish participants (n = 24) with a mean age of 80 years who had been offered TAVI all agreed to participate in a presurgical interview. The interviews were recorded, transcribed verbatim, and analyzed using qualitative content analysis.

RESULTS: Three patterns in the decision-making process about TAVI treatment-ambivalent, obedient, and reconciled-were identified. The ambivalent patient is unsure of the value of treatment and aware of the risks; the obedient patient is unsure of the value of one's own decision and wants to leave the decision to others; the reconciled patient has reached a point where there is no choice anymore and is always sure that the decision to undergo TAVI is right.

CONCLUSIONS: People with aortic stenosis who are offered TAVI need to discuss the risks and benefits in order to participate in decision making about the treatment. They have different patterns in decision making and would benefit from healthcare professionals being observant of them to support them in this process in a manner consistent with their values.

National Category
Cardiac and Cardiovascular Systems
Identifiers
urn:nbn:se:umu:diva-120771 (URN)10.1097/JCN.0000000000000282 (DOI)26110543 (PubMedID)
Available from: 2016-05-20 Created: 2016-05-20 Last updated: 2016-11-21Bibliographically approved
3. The trajectory of undergoing transcatheter aortic valve implantation: a grounded theory study
Open this publication in new window or tab >>The trajectory of undergoing transcatheter aortic valve implantation: a grounded theory study
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Keyword
Aortic stenosis, transcatheter aortic valve implantation, qualitative study, recovery, hope
National Category
Nursing
Research subject
Caring Sciences; Medicine, cardiovascular disease
Identifiers
urn:nbn:se:umu:diva-127833 (URN)
Note

This study was funded by Västerbotten’s County Council, Umeå University, and The Heart Foundation of Northern Sweden.

Available from: 2016-11-21 Created: 2016-11-20 Last updated: 2016-12-12
4. Patients’ self-reported function, symptoms and health-related quality of life before and 6 months after transcatheter aortic valve implantation and surgical aortic valve replacement
Open this publication in new window or tab >>Patients’ self-reported function, symptoms and health-related quality of life before and 6 months after transcatheter aortic valve implantation and surgical aortic valve replacement
2017 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 16, no 3, 213-221 p.Article in journal (Refereed) Published
Abstract [en]

Background: Aortic stenosis is the most common valve disease in western countries and has poor prognosis without treatment. Surgical aortic valve replacement (SAVR) is the gold standard, and transcatheter aortic valve implantation (TAVI) is a new method that is used in high-risk patients who are denied surgery. The purpose of treatment is not only to save life, but also to reduce symptoms and increase health-related quality of life (HRQoL).

Objective: The aim of this study was to describe patients’ self-reported outcomes in terms of physical function, symptoms, dependence, HRQoL, and cognitive function after TAVI and SAVR.

Methods: All patients treated with TAVI during 1 year (n = 24) and age-matched patients treated with SAVR (n = 24) were included. Data were collected on the day before and at 6 months after treatment using structural questionnaires.

Results: Self-rated function was low before treatment and increased at follow-up. A quarter of all patients reported syncope at baseline, and none reported this at follow-up. Breathlessness was reported by all patients to be the most limiting cardiac symptom, but the TAVI patients reported more severe symptoms. At 6 months’ follow-up, symptoms were reduced, but breathlessness and fatigue were still common, especially in the TAVI group. HRQoL, which was very low in the TAVI group at baseline, increased in all dimensions except social function.

Conclusion: We found no change in cognitive function or dependence at follow-up. There was no difference in the size of improvement between groups. The results could be helpful when informing future patients in order to give them realistic expectations.

Keyword
Aortic valve stenosis, transcatheter aortic valve implantation, surgical aortic valve replacement, self-rated outcome
National Category
Nursing
Research subject
Medicine, cardiovascular disease
Identifiers
urn:nbn:se:umu:diva-127870 (URN)10.1177/1474515116650342 (DOI)000398178900005 ()27169460 (PubMedID)2-s2.0-85012079897 (Scopus ID)
Available from: 2016-11-21 Created: 2016-11-20 Last updated: 2017-04-18Bibliographically approved

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