Abstract
BackgroundMotor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure. MND care is demanding, complex and involves a variety of care tasks. Family members may experience significant and enduring strain. We conducted a qualitative study to understand more about family caregivers’ work and sense of responsibility, exploring family caregivers’ accounts of caring for a family member with MND.MethodsWe recruited and interviewed a total of 25 participants from Norway, including 17 current and eight bereaved family caregivers. Drawing on theories of care by Corbin and Strauss, we analysed the data by a theoretical reading of the material to identify different types of care work.ResultsWe found that caregivers were engaged in five lines of care work that could be parallel or closely interconnected: i) immediate care work; ii) seeking information and clarity about the disease; iii) managing competing obligations; iv) maintaining normality; and v) managing external resources and assistance. Caregivers’ priorities were shaped by their interactions with the person with MND, available assistive devices, the development of the illness, and utilisation of paid care. Care work had a symbolic and moral meaning for caregivers, and was associated with self-worth and respect from others. Caregivers tried to balance their own expectations and others’ expectations without being overwhelmed by care work.ConclusionsA changing and potentially chaotic situation for family caregivers may compromise their capacity to utilise supportive services. Using the lines of work as a framework to assess caregivers’ preferences and priorities, health professionals may tailor assistance and support to family members caring for persons with MND.
Highlights
Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure
We had an interest in understanding caregivers’ expectations regarding performance of care work and utilisation of services. With this theoretical and contextual backdrop we focus on two research questions: 1) What lines of work are caregivers engaged in? 2) What social norms are these lines of work embedded in? By understanding more about caregivers’ work and sense of responsibility, we hope to contribute to enhanced collaboration and an increased uptake of supportive services
Five lines of care work We found that caregivers were engaged in five lines of care work that could be parallel or closely interconnected, and that their priorities about different kinds of work changed continuously during the course of the illness (Table 2)
Summary
Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure. Motor neurone disease (MND), known as amyotrophic lateral sclerosis (ALS), causes muscle wasting, breathing and swallowing difficulties, respiratory failure and may involve cognitive impairment [4, 5]. There is considerable variation in the clinical course of MND [5], and as the disease unfolds care tasks rapidly change, and decision-making has been described as “ongoing change and adaptation” [6]. Preferences for assistance may change during the course of the illness [8], and may fluctuate between alleviating family concerns and at the same time needing family assistance, often depending on when MND occurs in the
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Free) 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a call
