The role of specialist and general nurses working with people with multiple sclerosis

To describe the perceived role of nurses and other carers of people with multiple sclerosis from the perspective of different stakeholders (people with multiple sclerosis, non-specialist nurses, specialist nurses and other health care professionals).

Multiple sclerosis is one of the commonest causes of disability in young adults. People with multiple sclerosis require supportive care during the disease trajectory. The role of different health and social care providers has not been reported previously.

Survey.

Questionnaire data collected in 2002 during the first phase of scale development (health professionals n = 459; people with multiple sclerosis n = 65; total response rate 59.4%). The data were reanalysed to compare responses across sample groups.

There was consensus that neurologists and specialist nurses were the most appropriate professionals in the provision of specialist care with specialist nurses also being identified as key providers of emotional support. However, there were also significant differences in nominations reflecting the different perspectives of the stakeholder groups and a self-report bias. Each stakeholder group frequently emphasised their own perceived contribution to care. The different perspective of people with multiple sclerosis was also noteworthy with their greater emphasis on social care and lay support.

The findings indicate a dissonance in the views of different stakeholders within the care system. The division of labour associated with nursing care requires further exploration. The contrasting paradigms of health care professionals and people with multiple sclerosis regarding models of disability were highlighted.

Multiple sclerosis, like other chronic illnesses, requires substantial nursing care. There is a growing number of specialist nurses in the workforce, however, little is known how their role interfaces with other nurses.