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Updated: May 27, 2025
00:07
Home-Based Prescribed Pulmonary Exercise in Patients with Stable Chronic Obstructive Pulmonary Disease
Published on: August 24, 2019
9.6K
Living with progressive neurological disease and breathing difficulties
Anna Andersson-Watz1, Elisabeth Bergdahl2, Martin Eriksson Crommert1
1University Health Care Research Center, Faculty of Medicine and Health, Örebro University, Örebro, Sweden.
Annals of Palliative Medicine
|February 18, 2025
Summary
Individuals with progressive neurological diseases face challenges with breathing and cough function. Person-centered palliative care is crucial for improving their quality of life and dignity.
Area of Science:
- Neurology
- Palliative Care
- Qualitative Research
Background:
- Vulnerable patient group: progressive neurological disease with breathing/cough difficulties.
- Challenges in end-of-life support and holistic care needs.
- Need to understand lived experiences of these patients.
Purpose of the Study:
- Explore patient experiences with progressive neurological disease and breathing difficulties.
- Identify key factors influencing quality of life and care.
Main Methods:
- Qualitative content analysis.
- 15 interviews with 10 participants.
- Focus on lived experiences and patient perspectives.
Main Results:
- Experiences characterized by reconciliation, powerlessness, and fluctuating trust.
- Acceptance of severity alongside a drive to live fully.
- Importance of feeling heard, supported, and receiving symptom relief.
- Negative experiences: feeling disrespected, incompetent, and abandoned by healthcare.
Conclusions:
- Palliative person-centered care is essential for this population.
- Care should be holistic, dignity-preserving, empathetic, and compassionate.
- Early symptom relief is a critical component of care.
Keywords:
Neuromuscular diseasemechanical insufflation-exsufflation (MI-E)progressive neurological diseasequalitativeMore Related Videos
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