The care system: Tailoring well-being promotion to the needs of people with multiple sclerosis, caregivers and health professionals

Growing scientific evidence is currently supporting the need to broaden the traditional bio-medical focus in health research to comply with WHO’s definition of health as a state of complete physical, mental and social well-being, and not merely absence of disease or infermity. In this respect, the new approach of positive psychology has recently called for a shift in attention from the sole investigation of human shortcomings and deficits to the joint analysis of personal resources and potentials, showing through empirical studies that well-being is not the opposite of ill-being. Rather, it comprises unique dimensions that need to be taken into account in order to provide a comprehensive picture of individuals’ health conditions. For the first time in MS research, the present study aims at integrating the various components of well-being, by both adopting a bio-psycho-social systemic perspective and implementing a positive psychology approach. It will include individuals with MS, their caregivers and health professionals coming from various Italian regions. In addition, the project will comprise a basic research phase and an applied research phase, so as to make use of findings for suggestions to intervention. The basic research phase will investigate the relation of MS beliefs with the following ill- and well-being outcomes: depression, satisfaction with life, psychological well-being, sense of coherence, quality of life and benefit finding. Based on Leventhal’s commonsense model, we expect that cognitive and emotional illness representations have a direct relation with these outcomes, and an indirect one through health-related coping strategies, including social support. All participants will be administered a battery of self-report questionnaires investigating the above-described variables. For caregivers, the relation between caregiver burden and well-being will also be evaluated. Health professionals will be invited to assess job stressors and job satisfaction. Contextual, social and work pressures are assumed to influence caregivers’ and professionals’ well-being, thus indirectly affecting the well-being of persons with MS. Findings will be further addressed for application purposes. Their analysis will allow researchers to identify both the shortcomings and the strengths and resources available to participants in dealing with MS. In particular, virtuous models for well-being promotion will be identified for the implementation of individual and group intervention tailored to the needs of participants, in terms of (a) programs of psychological support targeting persons with MS and their caregivers; and (b) training courses on professional–patient relation and on job satisfaction.