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Person-centred care in rheumatology nursing in patients undergoing biological therapy: An explorative and interventional study
Jönköping University, School of Health Science, HHJ, Quality Improvement and Leadership in Health and Welfare.
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim was to explore and evaluate rheumatology nursing from a person-centred care perspective in patients undergoing biological therapy.

Methods: This thesis focuses on patients with chronic inflammatory arthritis (CIA) who were undergoing biological therapy at a rheumatology clinic in Sweden. Papers I and II had an explorative descriptive design with a phenomenographic approach. The 40 participants were interviewed about their dependence on or independence of a nurse for the administration of their infusions or injections. Paper III had a randomized controlled design involving 107 patients in the trial. The objective of the intervention was to replace every second monitoring visit at a rheumatologist-led clinic by a visit to a nurse-led rheumatology clinic, based on person-centred care. Paper IV had an explorative descriptive design with a qualitative content analysis approach. Interviews were conducted with 20 participants who attended the nurse-led rheumatology clinic.

Findings: Dependence on a rheumatology nurse for administration of intravenous infusions was described as invigorating due to the regular contact with the nurse, which provided security and involvement (paper I). Independence of a nurse for subcutaneous injections was understood by the patients in different ways and was achieved by struggling to cope with injecting themselves, learning about and participating in drug treatment (paper II). Patients with stable CIA receiving biological therapy were monitored by a nurse-led rheumatology clinic without any difference in outcome when compared to monitoring carried out at a rheumatologist-led clinic, as measured by the Disease Activity Score 28. Replacing one of the two annual rheumatologist outpatient follow-up visits by a visit to a nurse-led clinic for the monitoring of biological therapy was found to be safe and effective (paper III). A nurse-led rheumatology clinic, based on person-centred care, added value to the follow-up care of patients with stable CIA undergoing biological therapy by providing a sense of security, familiarity and participation (paper IV).

Conclusions: This thesis contributes a valuable insight into person-centred care as the core of rheumatology nursing in the area of biological therapy. The rheumatology nurse adds value to patient care when she/he gives patients an opportunity to talk about themselves as a person and allow their illness narrative to constitute a starting point for building collaboration, which encourages and empowers patients to be an active part in their biological therapy and become autonomous. A nurse who provides person-centred care and keeps the patients’ resources and needs in focus serves as an important guide during their healthcare journey.

Place, publisher, year, edition, pages
Jönköping: Publisher: School of Health Sciences , 2013. , 87 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 41
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hj:diva-20924ISBN: 978-91-85835-40-9 (print)OAI: oai:DiVA.org:hj-20924DiVA: diva2:615475
Public defence
2013-05-17, Forum Humanum, Hälsohögskolan, Jönköping, 13:00 (English)
Opponent
Supervisors
Available from: 2013-04-16 Created: 2013-04-10 Last updated: 2013-05-03Bibliographically approved
List of papers
1. Patients' dependence on a nurse for the administration of their intravenous anti-TNF therapy: A phenomenographic study
Open this publication in new window or tab >>Patients' dependence on a nurse for the administration of their intravenous anti-TNF therapy: A phenomenographic study
2009 (English)In: Musculoskeletal care, ISSN 1478-2189, Vol. 7, no 2, 93-105 p.Article in journal (Refereed) Published
Abstract [en]

Background: Pain, stiffness and functional restriction of the joints are the main problems for many patients with inflammatory rheumatic conditions. When conventional drugs fail to delay the development of the disease, the patient may require biological treatment such as anti-TNF therapy. Some biological drugs are administered in the form of intravenous infusions and thus the patient is obliged to attend a clinic in order to receive his/her medication, which can affect everyday life as well as independence. It is therefore important to focus on the patient perspective.Aim: The aim of this study was to describe variations in how patients with rheumatic conditions conceive their dependence on a nurse for the administration of their intravenous anti-TNF therapy.Method: The study had a descriptive qualitative design with a phenomenographic approach. Interviews were conducted with 20 patients.Result: Three descriptive categories and seven sub-categories emerged: Dependence that affords security (encountering continuity, encountering competence and obtaining information); Dependence that creates involvement (being allowed influence and being given freedom); Dependence that invigorates (obtaining relaxation and encountering the environment).Conclusion: The patients had not reflected on the fact that they were dependent on a nurse for the administration of their intravenous anti-TNF therapy, which may be due to their possibility to influence the treatment. The patients' needs should constitute the basis for the nurse's role in the provision of care. Copyright (c) 2008 John Wiley & Sons, Ltd.

Keyword
intravenous anti-TNF therapy, phenomenography, rheumatology nurse
National Category
Nursing
Identifiers
urn:nbn:se:hj:diva-9125 (URN)10.1002/msc.140 (DOI)18777511 (PubMedID)
Available from: 2009-05-27 Created: 2009-05-27 Last updated: 2013-04-16Bibliographically approved
2. Patients’ independence of a nurse for the administration of subcutaneous anti-TNF therapy: A phenomenographic study
Open this publication in new window or tab >>Patients’ independence of a nurse for the administration of subcutaneous anti-TNF therapy: A phenomenographic study
2010 (English)In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2631, Vol. 5, no 2, 5146- p.Article in journal (Refereed) Published
Abstract [en]

Rheumatology nursing supports patients to manage their lives and live as independently as possible without pain, stiffness and functional restrictions. When conventional drugs fail to delay the development of the rheumatic disease, the patient may require biological treatment such as self-administered subcutaneous anti-TNF therapy. It is therefore important that the patient perspective focuses on the life-changing situation caused by the administration of regular subcutaneous injections. The aim of this study was to describe variations in how patients with rheumatic diseases experience their independence of a nurse for administration of subcutaneous anti-TNF therapy. The study had a descriptive, qualitative design with a phenomenographic approach and was carried out by means of 20 interviews. Four ways of understanding the patients’ experience of their subcutaneous anti-TNF therapy and independence of a nurse emerged: The struggling patient; The learning patient; The participating patient; The independent patient. Achieving independence of a nurse for subcutaneous anti-TNF injections can be understood by the patients in different ways. In their strive for independence, patients progress by learning about and participating in drug treatment, after which they experience that the injections make them independent.

Keyword
independence, patient, phenomenography, rheumatology nurse, self-administration, subcutaneous anti-TNF therapy
Identifiers
urn:nbn:se:hj:diva-12880 (URN)10.3402/qhw.v5i2.5146 (DOI)
Available from: 2010-08-16 Created: 2010-08-15 Last updated: 2013-04-16Bibliographically approved
3. A nurse-led rheumatology clinic for monitoring biological therapy: A randomized controlled trial
Open this publication in new window or tab >>A nurse-led rheumatology clinic for monitoring biological therapy: A randomized controlled trial
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-20923 (URN)
Available from: 2013-04-10 Created: 2013-04-10 Last updated: 2013-04-16Bibliographically approved
4. Patients' experiences of a nurse-led rheumatology clinic in Sweden: a qualitative study
Open this publication in new window or tab >>Patients' experiences of a nurse-led rheumatology clinic in Sweden: a qualitative study
2012 (English)In: Nursing and Health Sciences, ISSN 1441-0745, E-ISSN 1442-2018, Vol. 14, no 4, 501-507 p.Article in journal (Refereed) Published
Abstract [en]

In this study, patients' experiences of a nurse-led rheumatology clinic for those undergoing biological therapy are discussed. The study had an explorative design, based on a qualitative content analysis with an inductive approach. Strategic sampling was used in order to achieve variations in experiences of a nurse-led clinic. Interviews were conducted with 20 participants, and the analysis resulted in the theme "the nurse-led rheumatology clinic provided added value to patient care". The participants' experiences of the encounter with the nurse led to a sense of security (due to competence and accessibility), familiarity (due to confirmation and sensitivity), and participation (due to exchange of information and involvement). Replacing every second visit to a rheumatologist with one to a nurse added value to the rheumatology care, making it more complete. Nurses and rheumatologists complemented each other, as they approached patients from different perspectives. This study suggests that a nurse-led rheumatology clinic adds value to the quality of care for patients in rheumatology units.

National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-20922 (URN)10.1111/j.1442-2018.2012.00723.x (DOI)23186524 (PubMedID)
Available from: 2013-04-10 Created: 2013-04-10 Last updated: 2017-12-06Bibliographically approved

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