Table 1 Categories and sub-categories extracted from the analysis of patients’ experiences
Main category | Sub-category | subcategory of subcategory | Free codes |
|---|---|---|---|
Psychosocial tensions | Stress | Physical symptoms | Stiff hands, stiff legs, balance problems, crooked lips, blurred vision, central vision halos, double vision, uncontrollable tremors, inability to lift objects, Negative consequences of pregnancy,… |
Emotional symptoms | Feeling anger, feeling depressed, fatigue, reduced self-confidence, pessimism, the feeling of losing desires and dreams,… | ||
Behavioral symptoms | Slowing down of their daily activities, making mistakes in doing activities, sexual dysfunction, talk fast, … | ||
Agitation | Family disorder | Threat of divorce, marital disputes, changes in the dynamics of family members, the failure to meet the expectations of family members, … | |
Treatment-related concerns | Drug shortages in pharmacies, drug embargoes, exorbitant drug costs, not having insurance, treatment related side effects, disappointment in the treatment, … | ||
Social relationship concerns | Concerns about impaired communication with the opposite sex, impaired communication with colleagues and superiors, losing prestige, fear of harming others at work, job threats, inability to communicate with others, the feeling of being misunderstood by others, transportation problems, … | ||
Stigmatization | Social stigma | Attributing inappropriate things and words to the patient, non-recognition of person's capability and competent to participate in the community, attributing the disease to other family members, fear of the patient, looking at the patient with a different perspective,. | |
Self-stigmatization (Internalized stigma) | Feelings of helplessness, negative thoughts (being imperfect), being useless, annoying others, adding burden, being dependent on others,… |