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

Abstract

Background: Due to the long-term and progressive nature of β-thalassemia major (β-TM), patients need comprehensive palliative and supportive care covering physical, mental, social, and spiritual aspects. 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 involved in-depth semi-structured individual interviews with 20 individuals living with β-TM at a university hospital in Ahvaz, Iran. The participants were selected through purposive sampling. Interviews continued until the saturation of data. All interviews were recorded, transcribed, and analyzed with conventional content analysis following the steps recommended by Elo and Kyngäs using MAXQDA software version 10. Results: Five overarching categories, each with multiple subcategories, were identified: “physical health needs," “sexual and reproductive health needs," “mental and emotional health needs," “social needs," and “need for access to comprehensive health services." Conclusion: According to the results of this study, unmet needs are prevalent throughout the thalassemia journey. Patients with β-TM require individual, psychosocial, and comprehensive healthcare support to address their needs. Therefore, further research is necessary to develop a nursing care plan for β-TM patients focusing on supportive-palliative care needs.