Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis study

Background: Behçet's syndrome (BS) is a chronic, multisystem inflammatory disorder characterized by diverse and complex clinical manifestations, resulting in varied patient care requirements. Objectives: This study aimed to explore the perceptions of patients with BS regarding the accountabilit...

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Main Authors: Neda Sayadi, Simin Jahani, Elham Rajaei
Format: Article
Language:English
Published: Kashan University of Medical Sciences 2025-06-01
Series:Nursing and Midwifery Studies
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Online Access:https://nmsjournal.kaums.ac.ir/article_205807_3384f239307bbe5fb29f660d23dddbc5.pdf
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author Neda Sayadi
Simin Jahani
Elham Rajaei
author_facet Neda Sayadi
Simin Jahani
Elham Rajaei
author_sort Neda Sayadi
collection DOAJ
description Background: Behçet's syndrome (BS) is a chronic, multisystem inflammatory disorder characterized by diverse and complex clinical manifestations, resulting in varied patient care requirements. Objectives: This study aimed to explore the perceptions of patients with BS regarding the accountability of the health system in addressing their care needs. Methods: A conventional content analysis was conducted involving 15 participants diagnosed with BS from April to July 2023. Participants were selected using purposive sampling. Data were collected through unstructured interviews, conducted in person (9 participants) and via telephone (6 participants). Data collection continued until thematic saturation was achieved, indicated by the repetition of codes and concepts. The data were analyzed using the approach outlined by Graneheim and Lundman, while trustworthiness was assessed based on the criteria proposed by Lincoln and Guba, as well as Sim and Sharp. Results: Analysis of the data revealed two primary themes: 1) unmet care needs, which included sub-themes such as confusion regarding medical diagnoses, inefficiencies in the appointment booking system, inadequate consultation time, financial burdens related to medical costs, challenges in accessing medications, and a lack of patient education; and 2) threats to physical and psychosocial well-being, encompassing sub-themes such as decreased engagement, limitations imposed by pain and discomfort, difficulties in sexual relationships, uncertainty regarding disease progression, professional decline, and self-imposed social isolation. Conclusion: The findings of this study indicate that patients with BS encounter numerous challenges within the health system that hinder their ability to meet their health needs, resulting in adverse consequences for their overall well-being. These insights should inform healthcare policymakers to develop more effective healthcare policies, allocate resources more efficiently, and create a more equitable healthcare system. For nursing professionals, these findings highlight the importance of improving patient outcomes, enhancing job satisfaction, and enabling the delivery of more personalized and holistic care.
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spelling doaj-art-e3476273b97e48109aa2a9e11fd48ea12025-08-20T03:51:44ZengKashan University of Medical SciencesNursing and Midwifery Studies2322-14882322-16742025-06-01142839210.48307/nms.2024.435505.1333205807Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis studyNeda Sayadi0Simin Jahani1Elham Rajaei2Department of Medical and Surgical Nursing, School of Nursing and Midwifery, Nursing Care Research Center in Chronic Diseases, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, IranDepartment of Medical and Surgical Nursing, School of Nursing and Midwifery, Nursing Care Research Center in Chronic Diseases, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, IranGolestan Hospital Clinical Research Development Unit, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, IranBackground: Behçet's syndrome (BS) is a chronic, multisystem inflammatory disorder characterized by diverse and complex clinical manifestations, resulting in varied patient care requirements. Objectives: This study aimed to explore the perceptions of patients with BS regarding the accountability of the health system in addressing their care needs. Methods: A conventional content analysis was conducted involving 15 participants diagnosed with BS from April to July 2023. Participants were selected using purposive sampling. Data were collected through unstructured interviews, conducted in person (9 participants) and via telephone (6 participants). Data collection continued until thematic saturation was achieved, indicated by the repetition of codes and concepts. The data were analyzed using the approach outlined by Graneheim and Lundman, while trustworthiness was assessed based on the criteria proposed by Lincoln and Guba, as well as Sim and Sharp. Results: Analysis of the data revealed two primary themes: 1) unmet care needs, which included sub-themes such as confusion regarding medical diagnoses, inefficiencies in the appointment booking system, inadequate consultation time, financial burdens related to medical costs, challenges in accessing medications, and a lack of patient education; and 2) threats to physical and psychosocial well-being, encompassing sub-themes such as decreased engagement, limitations imposed by pain and discomfort, difficulties in sexual relationships, uncertainty regarding disease progression, professional decline, and self-imposed social isolation. Conclusion: The findings of this study indicate that patients with BS encounter numerous challenges within the health system that hinder their ability to meet their health needs, resulting in adverse consequences for their overall well-being. These insights should inform healthcare policymakers to develop more effective healthcare policies, allocate resources more efficiently, and create a more equitable healthcare system. For nursing professionals, these findings highlight the importance of improving patient outcomes, enhancing job satisfaction, and enabling the delivery of more personalized and holistic care.https://nmsjournal.kaums.ac.ir/article_205807_3384f239307bbe5fb29f660d23dddbc5.pdfbehçet's syndromeaccountabilityqualitative researchhealthcare needs
spellingShingle Neda Sayadi
Simin Jahani
Elham Rajaei
Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis study
Nursing and Midwifery Studies
behçet's syndrome
accountability
qualitative research
healthcare needs
title Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis study
title_full Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis study
title_fullStr Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis study
title_full_unstemmed Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis study
title_short Behçet's syndrome patients' perception of the health system's accountability to care needs: A content analysis study
title_sort behcet s syndrome patients perception of the health system s accountability to care needs a content analysis study
topic behçet's syndrome
accountability
qualitative research
healthcare needs
url https://nmsjournal.kaums.ac.ir/article_205807_3384f239307bbe5fb29f660d23dddbc5.pdf
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AT elhamrajaei behcetssyndromepatientsperceptionofthehealthsystemsaccountabilitytocareneedsacontentanalysisstudy