Living with progressive neurological disease and breathing difficulties

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.

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

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.

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.