Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare
A qualitative study
Bibliographic Data
| ID | 12289778 |
|---|---|
| Authors | Sverre Vigeland Lerum (Institute of Health and Society; University of Oslo; Oslo Norway, corresponding author), Kari N Solbrække (0000-0003-2684-5397, University of Oslo), Jan C Frich (0000-0001-9079-7508, Institute of Health and Society; University of Oslo; Oslo Norway) |
| Year | 2017 |
| Volume | 25 |
| Issue | 4 |
| Pages | 1355-1363 |
| Publication date | 2017-02-22 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Health & Social Care in the Community (JOURNAL) |
| Journal identifiers | ISSN: 0966-0410 • E-ISSN: 1365-2524 |
| Publisher | Wiley (PUBLISHER • GB) |
| DOI | 10.1111/hsc.12432 |
| PMID | 28226395 |
| OpenAlex | W2589759289 |
| Language | EN |
| References cited | 34 |
Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis and respiratory failure, with a life expectancy of 2-4 years. In order to better understand how MND is managed in the community, we conducted a qualitative study to explore the challenges healthcare professionals encounter when managing MND in primary healthcare. Based on data from 15 semi-structured interviews with primary healthcare professionals in Norway, we found that MND is viewed as a condition that requires exceptional effort and detailed planning. Healthcare professionals reported five main challenges in managing MND in primary healthcare: (i) building relationships with those giving and receiving care in the home; (ii) preventing caregiver burnout and breakdown; (iii) providing tailored care; (iv) ensuring good working conditions in patients' homes; and (v) recruiting and retaining qualified nursing assistants. Healthcare professionals reported needing working conditions that allow them to tailor their approach to the personal, emotional and existential nature of care preferences of those living with MND. However, people with MND and their families were sometimes perceived by healthcare professionals to prefer a strictly task-focused relationship with care providers. Such relationships limited the healthcare professionals' control over the MND trajectory and their capacity to prevent family caregiver burnout and breakdown. Adequate resources, along with training and support of nursing assistants, may increase the continuity of nursing assistants. Responsiveness to patient and family needs may enhance collaboration and promote tailored primary care and support for patients with MND and their families
Amyotrophic lateral sclerosis · Burnout · Disease · Health care · Health professionals · Motor neurone disease · Qualitative research · Amyotrophic Lateral Sclerosis Research · Clinical Psychology · Healthcare innovation and challenges · Interprofessional Education and Collaboration · Medicine · Nursing · Psychology
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| Highly cited | No |
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