To Örebro University

BACKGROUND: Persons diagnosed with progressive neurological disease who experience breathing difficulties and impaired cough function, are a vulnerable group. Some are in the late end-of-life stage, and providing the right kind of support is a challenge. There is a need to address the broader experiences of living with a progressive neurological disease including breathing difficulties and impaired cough function. Therefore, the aim was to explore persons' experiences of living with progressive neurological disease and breathing difficulties.

METHODS: We used qualitative content analysis, drawing on 15 interviews with 10 persons with progressive neurological disease.

RESULTS: Living with progressive neurological disease and breathing difficulties can be understood as a reconciliation with a difficult life, a powerlessness in the struggle against deterioration and a fluctuation between feelings of trust and mistrust. An acceptance of the severity was described and a strive to make the best of life. The ongoing struggle against deterioration brought feelings of uncertainty, fear, and powerlessness, impacting the entire life. Feeling safe, supported, and receiving symptom-relief care highlighted the importance of being listened to, feeling goodwill and caring presence of others. Feeling badly treated and, not respected as a whole and competent person, were expressed as being devastating and a sense of being abandoned by health care.

CONCLUSIONS: Our study emphasizes the importance of providing palliative person-centered care for this group. This implies a holistic, dignity-preserving, empathetic and compassionate care including symptom relief early in the illness trajectory.