Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis

Background: Due to the long-term and progressive nature of β-thalassemia major (β-TM), patientsneed comprehensive palliative and supportive care covering physical, mental, social, and spiritualaspects. The first step in providing palliative and supportive care is identifying the patients’ needs.This...

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Main Authors: Mehrnaz Ahmadi, Maryam Rassouli, Mahin Gheibizadeh, Abbas Ebadi, Marziyeh Asadizaker
Format: Article
Language:English
Published: Shiraz University of Medical Sciences 2025-04-01
Series:International Journal of Community Based Nursing and Midwifery
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Online Access:https://ijcbnm.sums.ac.ir/article_50644_35bc23c7cb0cd22ec13d53ae8d69a1de.pdf
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author Mehrnaz Ahmadi
Maryam Rassouli
Mahin Gheibizadeh
Abbas Ebadi
Marziyeh Asadizaker
author_facet Mehrnaz Ahmadi
Maryam Rassouli
Mahin Gheibizadeh
Abbas Ebadi
Marziyeh Asadizaker
author_sort Mehrnaz Ahmadi
collection DOAJ
description Background: Due to the long-term and progressive nature of β-thalassemia major (β-TM), patientsneed comprehensive palliative and supportive care covering physical, mental, social, and spiritualaspects. The first step in providing palliative and supportive care is identifying the patients’ needs.This study aimed to explore the palliative and supportive care needs of patients with β-TM.Methods: A qualitative study was conducted from April 2019 to December 2019. The study involvedin-depth semi-structured individual interviews with 20 individuals living with β-TM at a universityhospital in Ahvaz, Iran. The participants were selected through purposive sampling. Interviewscontinued until the saturation of data. All interviews were recorded, transcribed, and analyzed withconventional content analysis following the steps recommended by Elo and Kyngäs using MAXQDAsoftware version 10.Results: Five overarching categories, each with multiple subcategories, were identified: “physicalhealth needs,” “sexual and reproductive health needs,” “mental and emotional health needs,” “socialneeds,” and “need for access to comprehensive health services.”Conclusion: According to the results of this study, unmet needs are prevalent throughout the thalassemiajourney. Patients with β-TM require individual, psychosocial, and comprehensive healthcare supportto address their needs. Therefore, further research is necessary to develop a nursing care plan for β-TMpatients focusing on supportive-palliative care needs.
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issn 2322-2476
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publishDate 2025-04-01
publisher Shiraz University of Medical Sciences
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spelling doaj-art-68a3ec56d4aa483aaed018b4ebcf86302025-08-20T02:27:09ZengShiraz University of Medical SciencesInternational Journal of Community Based Nursing and Midwifery2322-24762322-48352025-04-0113211312510.30476/ijcbnm.2024.102440.248650644Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content AnalysisMehrnaz Ahmadi0Maryam Rassouli1Mahin Gheibizadeh2Abbas Ebadi3Marziyeh Asadizaker4Nursing Care Research Center in Chronic Diseases, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran;Cancer Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran;Nursing Care Research Center in Chronic Diseases, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran;Nursing Care Research Center, Clinical Sciences Institute, Baqiyatallah University of Medical Sciences, Tehran, IranNursing Care Research Center in Chronic Diseases, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran;Background: Due to the long-term and progressive nature of β-thalassemia major (β-TM), patientsneed comprehensive palliative and supportive care covering physical, mental, social, and spiritualaspects. The first step in providing palliative and supportive care is identifying the patients’ needs.This study aimed to explore the palliative and supportive care needs of patients with β-TM.Methods: A qualitative study was conducted from April 2019 to December 2019. The study involvedin-depth semi-structured individual interviews with 20 individuals living with β-TM at a universityhospital in Ahvaz, Iran. The participants were selected through purposive sampling. Interviewscontinued until the saturation of data. All interviews were recorded, transcribed, and analyzed withconventional content analysis following the steps recommended by Elo and Kyngäs using MAXQDAsoftware version 10.Results: Five overarching categories, each with multiple subcategories, were identified: “physicalhealth needs,” “sexual and reproductive health needs,” “mental and emotional health needs,” “socialneeds,” and “need for access to comprehensive health services.”Conclusion: According to the results of this study, unmet needs are prevalent throughout the thalassemiajourney. Patients with β-TM require individual, psychosocial, and comprehensive healthcare supportto address their needs. Therefore, further research is necessary to develop a nursing care plan for β-TMpatients focusing on supportive-palliative care needs.https://ijcbnm.sums.ac.ir/article_50644_35bc23c7cb0cd22ec13d53ae8d69a1de.pdfneeds assessmentpalliative supportive carequalitative studythalassemia major
spellingShingle Mehrnaz Ahmadi
Maryam Rassouli
Mahin Gheibizadeh
Abbas Ebadi
Marziyeh Asadizaker
Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis
International Journal of Community Based Nursing and Midwifery
needs assessment
palliative supportive care
qualitative study
thalassemia major
title Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis
title_full Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis
title_fullStr Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis
title_full_unstemmed Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis
title_short Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis
title_sort experiences of iranian patients with thalassemia major regarding their palliative and supportive care needs a qualitative content analysis
topic needs assessment
palliative supportive care
qualitative study
thalassemia major
url https://ijcbnm.sums.ac.ir/article_50644_35bc23c7cb0cd22ec13d53ae8d69a1de.pdf
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