About the project
The neurological condition Amyotrophic Lateral Sclerosis (ALS, motor neuron disease (MND) in Britain) affects voluntary control of muscles. Afflicted individuals are gradually paralyzed, and normally dies within 2 to 5 years after onset, but some live for several decades.
In the early progression of the illness, tasks such as cooking, dressing, or cleaning calls for the involvement of others. In more advanced states scratching a leg, adjusting the position of the head, or taking a sip of tea can not be done by the person with ALS him or herself. Care for the person with ALS is provided from family members, primary health care services, specialists and hospital clinics.
ALS is almost exclusively a physiological disease, still it has a profound social impact. The disease progression has direct and indirect effects on almost every aspect of daily life for the person and family afflicted; making every day and taken-for-granted assumptions disrupted. Additionally there is need of a mobilisation of resources, to perform unpaid care by family, and paid care through health care services.
The project will work out the details of the social aspects of the illness, especially concerned with the organisation of care. The project will elaborate on the care given to persons with ALS, by investigating the roles and experiences by paid and unpaid carers, the coordination of care work within the health care service, and between the health care service and the home. In-depth interviews will be the main methodological approach.
Objectives
The overarching goals of the project is to shed light on:
- The specific needs concerning organisation of care regarding persons with ALS
- The changing nature of illness, death and dying, due to development in medical technology
- The underlying premises for coordination and integration in the health care services, which can be transferable to other conditions
Sub-projects
These issues will be elaborated on through three sub-projects, all focusing on experiences of performance and coordination of ALS care. The central feature of all of the sub-projects is the negotiations among providers to define what needs to be done, and the coordination of whom to perform care.
- Most ALS care takes place in the home of the person with ALS, and family members play a central role in management and care. The first sub-project aims to elaborate on the role of the (family) caregiver. How do caregivers manage 1) the expectations they meet, from the person with ALS, members of the family, and paid carers to perform care work, and 2) the coordination of care work in the home?
- The multitude of needs regarding ALS, calls for a multitude of treatment and care providers. The second sub-project aims to elaborate on the role of the health professionals: How do health professionals in primary health care, and in hospital settings manage 1) the boundaries of their own roles and tasks, and 2) the boundaries of the roles and tasks of other health professionals in the health care service?
- When the home changes to a workplace, the constitution of care becomes a complex activity; interweaving care needs and expectations from the person with ALS and family, but also from professionals and policy guidelines. The third sub-project aims to elaborate on the coordination between the home and the health care service: How do the views of unpaid and paid carers harmonize regarding 1) the defining of care needs, and 2) the expectations to perform care work?
Financing
The project is financed by the University of Oslo
Start - Finish
The project started in September 2010, and is running until August 2014.