Jones, G., Brown Hajdukova, E., Hanna, E. et al. (10 more authors) (2021) It’s long-term, well it’s for life basically: Understanding and exploring the burden of immunoglobulin treatment in patients with primary immunodeficiency disorders. Qualitative Research in Medicine and Healthcare, 4 (3). pp. 117-131. ISSN 2532-2044
Abstract
This paper describes the burden of receiving immunoglobulin (Ig) treatment from the perspective of patients diagnosed with a Primary Immunodeficiency (PID). Thirty semi-structured interviews with patients receiving intravenous (n=21) and subcutaneous immunoglobulin (n=9) therapy, either at home or in hospital were undertaken. Underpinned by a phenomenological theoretical framework, and using a qualitative, inductive thematic approach to prioritise patients’ concerns, we identified that Ig treatment requires considerable effort by the patient, particularly in relation to the amount of time, organization and planning that is needed. They also face numerous physical, social, relationship, emotional, role functioning, travelling, and financial challenges in their effort to undergo and maintain their infusions and care for their health. Some qualitative differences in treatment burden were noted between home and hospital settings which contributed to non-adherence to those regimes. Immunoglobulin treatment burden is complex and influenced by therapeutic mode and setting and the personal circumstances of the patient. As choice over treatment method appears to be mainly informed by lifestyle needs, PID patients may benefit from more information about these potential Ig lifestyle influences when selecting which form of treatment to take together with their health professional.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2020 The Authors. This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License. (https://creativecommons.org/licenses/by-nc/4.0/) |
Dates: |
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Institution: | The University of Sheffield |
Academic Units: | The University of Sheffield > Faculty of Medicine, Dentistry and Health (Sheffield) > School of Health and Related Research (Sheffield) > ScHARR - Sheffield Centre for Health and Related Research |
Depositing User: | Symplectic Sheffield |
Date Deposited: | 18 Mar 2021 11:45 |
Last Modified: | 19 Mar 2021 00:00 |
Status: | Published |
Publisher: | PAGEPress Publications |
Refereed: | Yes |
Identification Number: | 10.4081/qrmh.2020.9564 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:172085 |
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