Understanding Palliative Care Needs in Multiple Sclerosis: Insights from a Qualitative Descriptive Study.

Abstract

Background: Given the variability in the provision of palliative care for patients with multiple sclerosis (MS) across diverse communities and cultural contexts, and considering the paramount importance of a patient-centered approach in needs assessment, this study aimed to identify the palliative care needs of individuals with MS.

Materials and methods: This qualitative descriptive study employed a directed content analysis approach on 2024. Data were collected through semistructured and in-depth 30-minute interviews with 14 patients diagnosed with MS in southern Iran. The interviews continued until data saturation was achieved. Concurrently with data collection, analysis was performed using the Elo-Kyngas method and MAXQDA 2022. The Guba and Lincoln criteria were utilized to ensure the validity and reliability of the data.

Results: The analysis identified eight primary categories of needs that align with the National Consensus Project framework: structure and processes of care, physical, psychological and psychiatric, social, cultural, ethical and legal, spiritual, religious, and existential aspects, and end-of-life care.

Conclusions: A thorough understanding of the palliative care needs of patients with MS can improve the responsiveness of the treatment team and empower caregivers to address these needs more effectively. Consequently, this leads to the delivery of more comprehensive palliative care services for these patients. While the palliative care needs of patients can be considered a multidimensional concept, determining the perceptions of family caregivers and healthcare providers regarding these needs is recommended to develop a more comprehensive approach in future research.