Sammendrag
Patients on hemodialysis who participate in their treatment may experience health benefits, but are still passive care recipients. The increasing incidence of younger adults in need of dialysis may have concerns related to education, employment and family life and we aimed to explore their experiences of involvement in different phases of the treatment trajectory. Through a narrative approach, 11 participants aged 35-64 disclosed their experiences in the context of being dependent on a life-saving treatment. We searched for similarities and contradictions within the narrative plotlines, and were sensitive to nuances of meanings, possible underlying meanings, turning points and shifts in the storytellers` voices. Our analysis suggests that the patients had their lives fully controlled by dialysis, experiencing several losses. The treatment was both a lifeline and a shackle. They emphasized to be seen, heard and respected as more than patients and fought to keep their autonomy and maintain life as they knew it.
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