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.
Subject(s)
Health Personnel/psychology , Motor Neuron Disease/therapy , Patient Care Planning/organization & administration , Primary Health Care/organization & administration , Burnout, Professional/prevention & control , Caregivers/psychology , Home Care Services/organization & administration , Humans , Interviews as Topic , Norway , Nursing Assistants/organization & administration , Professional-Patient Relations , Qualitative Research , WorkforceABSTRACT
BACKGROUND: Motor 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. METHODS: We 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. RESULTS: We 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. CONCLUSIONS: A 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.
Subject(s)
Caregivers/psychology , Home Nursing/methods , Motor Neuron Disease/therapy , Adult , Aged , Cost of Illness , Female , Humans , Interpersonal Relations , Male , Middle Aged , Norway , Qualitative Research , Social Support , Stress, Psychological/psychologyABSTRACT
This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.
