Multiperspective interpretative phenomenological analysis of dignity in people with neurodegenerative diseases

Background Dignity is a fundamental value and right of every human being and a central concept in nursing care. Due to radical life changes caused by neurodegenerative diseases, there is an increased risk of experiencing impaired dignity. Research aim The aim was to gain an understanding of how people suffering from selected neurodegenerative diseases make sense of their dignity. Research design and participants A qualitative, multiperspective interpretative phenomenological design was used, collecting data through semi-structured, face-to-face interviews with 9 participants with multiple sclerosis and 5 participants with Parkinson’s disease. Ethical considerations The study was approved by the faculty Ethical Committee (No. EK 49/2021). Findings Two overlapping themes were identified: Embodiment and new identity affecting self-worth, and Desire to be accepted. The dignity of the participants was shaped by reframing values, active determination to fight for the highest possible quality of life, and receiving support from the community and relationships. Conversely, bodily limitations with unpredictable symptoms, stigmatization, expressions of pity, and loss of independence negatively impacted their sense of identity. In the context of dignified healthcare, participants emphasized the importance of a partnership approach, the need to be heard, and the ability to rely on healthcare professionals. The inhumane approach, disinterest, and paternalism were seen as aspects that increased vulnerability and diminished dignity. Conclusions Individual narratives provide valuable insights into the dynamic and relational nature of dignity. Identifying unique lived experiences of dignity shaped by illness and understanding the needs of a particular person is an integral part of dignified life and person-centered care.