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What matters to you? – Free-text comments in a questionnaire from patients undergoing radiotherapy
Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.ORCID iD: 0000-0002-4977-1434
Karolinska Institute, Department of Learning, Informatics, Management and Ethics, Stockholm, Sweden.
Umeå University, Faculty of Medicine, Department of Nursing.
Umeå University, Faculty of Medicine, Department of Radiation Sciences, Radiation Physics.
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(English)Manuscript (preprint) (Other academic)
Abstract [en]

Background: Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory and RT is often associated with unfamiliar procedures in a highly technical environment. The purpose of this study was to explore how patients experience RT and the related processes, as described in free-text comments in a large Swedish survey with questionnaires including items on psychosocial climate and treatment environment.

 

Methods: The data consisted of free-text comments from one open-ended question: “Is there anything else you want us to know” and were analysed using qualitative content analysis.

 

Results: Of 825 returned questionnaires, 261 contained free-text comments from patients (32%). The analysis of the data resulted in four major categories: experiencing the high-tech RT environment, understanding the RT procedures and side effects, dealing with daily life during RT, and the nurses’ role and performance.

 

Conclusion: The categories reflect the patients’ experiences and emphasize how important it is to evaluate what really matters to the patients when changing procedures, practices, and how to minimize disturbances in the patients’ daily lives. 

Keyword [en]
patient experience; radiotherapy; qualitative
National Category
Cancer and Oncology
Research subject
Oncology
Identifiers
URN: urn:nbn:se:umu:diva-127454OAI: oai:DiVA.org:umu-127454DiVA: diva2:1046329
Available from: 2016-11-14 Created: 2016-11-14 Last updated: 2016-11-14
In thesis
1. Patient experiences of the radiotherapy process and treatment
Open this publication in new window or tab >>Patient experiences of the radiotherapy process and treatment
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background

Most cancer patients undergo external radiotherapy (RT) at some stage during their treatment trajectory. RT is often associated with unfamiliar procedures where the technical environment, side effects and interaction with staff seem to play a major role in the patient’s treatment experience. These experiences could sometimes lead to disruption of the treatment which may have negative consequences for the outcome. The overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.

Aim

The overall aim of this thesis was to gain further knowledge about how patients experience RT and the related processes. Such knowledge is of vital importance when developing and improving care within a high-tech RT environment.

Methods

To gain further knowledge and understanding about patients experience of RT both quantitative (I, II, III) and qualitative (III, IV) methodology were used. The data in the thesis focused on patients undergoing external RT at different RT units in Sweden. Study I and II, focused on two regions, the northern region of Sweden and the region of Stockholm and Gotland.  Study III and IV were performed at eight different RT units in Sweden.

Results

In Study I, two types of topical agents (Calendula Weleda cream vs. Essex cream) were compared regarding reducing the risk of severe acute radiation skin reactions (ARSR). No difference in severe ARSR was found between the groups and the patients reported low levels of ARSR. In Study II, the influence of an RT unit’s psychosocial climate and treatment environment on cancer patients’ anxiety during external RT was evaluated. Data was collected (questionnaire) from 892 patients. The results showed that both the treatment environment and the psychosocial climate of the RT unit significantly impacted cancer patient anxiety levels. In Study III & IV, a questionnaire to measure the patient´s experience during external RT was developed and tested. The results showed that the RT Experience Questionnaire (RTEQ), with 23 items, was a tentatively valid and reliable instrument to measure how patients experience the RT process and the environment in the treatment room. In Study IV, written comments from the open-ended question “Is there anything else you want us to know?” in the preliminary RTEQ was analysed with qualitative content analysis. This data was abstracted into the following four major categories reflecting the experience of the RT process:  Experiences in the high tech RT environment; Understanding the RT procedures and side effects; Dealing with daily life during RT and The nurses’ role and performance.

Conclusion

The RT environment and the RT related processes seem to impact cancer patients, both physically and psychologically. A person-centered care approach, as well as attention to the design, both of the treatment process and the physical environment could significantly improve the patient experience and patient involvement. The results also highlight the importance of taking patient experiences into account when introducing new RT methods and techniques.

Place, publisher, year, edition, pages
Umeå: Umeå universitet, 2016. 52 p.
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1860
Keyword
Cancer, radiotherapy, radiation skin reactions, patient experience, treatment environment, anxiety, person-centred care, questionnaire.
National Category
Cancer and Oncology
Research subject
Oncology
Identifiers
urn:nbn:se:umu:diva-127456 (URN)978-91-7601-594-0 (ISBN)
Public defence
2016-12-09, Sal E04, Byggnad 6E, Biomedicin, Norrlands universitetssjukhus, Umeå, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2016-11-17 Created: 2016-11-14 Last updated: 2016-11-15Bibliographically approved

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