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Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study
- Source :
- Health & Social Care in the Community. 25:1355-1363
- Publication Year :
- 2017
- Publisher :
- Hindawi Limited, 2017.
-
Abstract
- 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.
- Subjects :
- medicine.medical_specialty
Sociology and Political Science
Health Personnel
Primary health care
Disease
Burnout
Patient Care Planning
Interviews as Topic
03 medical and health sciences
0302 clinical medicine
Nursing
Nursing Assistants
medicine
Humans
030212 general & internal medicine
Motor Neuron Disease
Psychiatry
Burnout, Professional
Wasting
Qualitative Research
Primary Health Care
Health professionals
Norway
business.industry
Health Policy
Public Health, Environmental and Occupational Health
Professional-Patient Relations
medicine.disease
Home Care Services
Caregivers
Workforce
Life expectancy
medicine.symptom
business
Motor neurone disease
030217 neurology & neurosurgery
Social Sciences (miscellaneous)
Qualitative research
Subjects
Details
- ISSN :
- 09660410
- Volume :
- 25
- Database :
- OpenAIRE
- Journal :
- Health & Social Care in the Community
- Accession number :
- edsair.doi.dedup.....06ce87125c0cda20646cdd0128e8d550