Perceptions de professionnels envers l’introduction de l’approche palliative chez les personnes vivant avec la sclérose en plaques à domicile
The diagnosis of multiple sclerosis (MS) has important implications for people affected by its incurable and degenerative nature. MS, resulting in significant functional losses, often requires the involvement of professionals from local community service centres. In recent years, the palliative approach has been described for professionals in their end-of-life support. However, no identified literature links MS to the community-based palliative approach. This qualitative descriptive study has been designed to describe the perceptions of professionals working at home with regard to the introduction of palliative approach in the care trajectory of people living with advanced MS. Based on the nursing model for chronic disease management based upon the trajectory framework of Corbin and Strauss's (1991), focus groups and individual interviews were conducted with occupational therapists, nurses and social workers. The method of analysis by analytical questioning of Paillé and Mucchielli (2012) was used for data analysis. In summary, the data analysis has allowed us to describe the professionals' views of introducing a palliative approach into their care of people with MS as 1) being supportive, 2) opening the discussion with the person and his family about their needs and their desires at the end of life and 3) adapting professional interventions to people and families’ needs and objectives. However, professionals had several difficulties introducing these elements, considering the characteristics of the disease, the absence of prognosis and the risk of loosing hope. They described a duality in which they consider it mandatory to introduce the palliative approach, but do not feel comfortable integrating it systematically into the delivery of their care. Recommendations for nursing management, practice, education and research were issued as a result of this study.
Palliative approach Multiple sclerosis Home-based professionals Home-based care