The Lived Experiences of Families of Individuals with Multiple Sclerosis in Saudi Society
(Toward a Proposed Professional Framework from a Family Social Work Perspective)
DOI:
https://doi.org/10.33193/eJHAS.23.2026.458Keywords:
Multiple sclerosis, patients’ families, lived experiences, family adaptation, family social workAbstract
This study aimed to explore the lived experiences of families of individuals with multiple sclerosis in coping with the disease in Saudi society. It also sought to identify the challenges, needs, coping strategies, and sources of support experienced by these families, and to develop a proposed professional framework from a family social work perspective. Methodology: The study adopted a qualitative methodology using a phenomenological approach. A purposive sample of 16 family members of individuals with multiple sclerosis in Jeddah was selected. Data were collected through semi-structured interviews and analyzed using thematic analysis. The findings revealed four main themes. The first addressed families’ lived experiences, beginning with the emergence and difficulty of interpreting symptoms, followed by diagnosis, reorganization of family life, and adjustment to the changing course of the disease. The second highlighted psychological, emotional, family, social, health, and physical care challenges, including anxiety, emotional suppression, helplessness, guilt, changing roles, increased responsibilities, and limited public understanding of the disease. The third emphasized families’ need for psychological and family counseling and continuous education. The fourth showed that families relied on religious support, family support, and accumulated experience to adapt. The study concluded by proposing an integrated family-based professional framework to enhance family stability and adaptation.
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