Experiences of Iranian Patients with Thalassemia Major Regarding Their Palliative and Supportive Care Needs: A Qualitative Content Analysis.
Mehrnaz Ahmadi, Maryam Rassouli, Mahin Gheibizadeh and 2 others
PMID 40322057WHAT IT FOUND
Patients with thalassemia major described needs for pain and fatigue guidance, sexual and fertility information, emotional support, social awareness, and accessible continuous care.
These needs sit alongside transfusion and medication care.
Key findings
01Five main categories of palliative and supportive care needs emerged: physical health, sexual and reproductive health, mental and emotional health, social needs, and access to comprehensive health services.
02Almost all participants described pain as a problem, and they said they needed support to manage it.
03Fatigue impaired participants' ability to undertake daily living activities, and they wanted guidance to manage it.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
Participants were recruited from one thalassemia centre in Iran, so the needs may reflect local service shortages. The study asked patients about care needs but did not ask nurses or family caregivers. 20 participants were interviewed, so the themes may not represent all patients with β-thalassemia major. The study reports needs and experiences, not effects of a tested intervention.
The easy way to misread this
Do not read these needs as proof that a service change improves thalassemia outcomes. This was a qualitative study of patients' needs. It did not test any intervention.