The Roma people are the largest ethnic minority group in the EU and all over, they have been subject to prejudice, stigma, discrimination and oppression. Thus, Roma are the most economically and socially excluded and marginalized group in Europe. The Roma living in Sweden are no exception; many are on the margins of society and face problems of social exclusion, institutional discrimination, low education, unemployment, and poor objective health. The Roma have been treated as a helpless group in need of “expert” help and action from the authorities. They have usually not been given the opportunity to actively participate in adjusting efforts to their needs and situation. An alternative approach to the Roma situation is to allow the Roma to take the leading role and to initiate processes and activities concerning the group. These were the foundations for the health promotion programme based on participatory action research (PAR) initiated in West Sweden in 2009. Through work-integrated learning (WIL) and the principle of training the trainers, the purpose of the programme was to strengthen Roma empowerment and participation in society, enabling Roma-led integration. The overall aim of the PhD thesis is to analyze and elaborate a WIL model to be applied in empowerment and adult education for minority- and vulnerable groups. The thesis is based on five papers:
Article 1 aims to examine how 14 Roma adolescents in West Sweden perceive the concepts of health, well-being and quality of life, and further, to investigate the degree to which they consider themselves able to cope with their own life situation within these areas. The data, comprising 6 interviews, was analysed through qualitative content analysis. The most common understanding of health and well-being was to feel good, secure, happy and having a wide social network of family and friends. The respondents perceived their own health and well-being to be good. Freedom, independency, education and employment were the most important elements of QoL. Social support was the most frequently used coping strategy.
Article 2 aims to describe how 33 Roma people in West Sweden understand health, well-being, and quality of life within the Roma context, and how they cope with their life-situation. The data, consisting of 27 interviews, were analysed qualitatively using a phenomenological hermeneutic approach. Crucial elements of the respondents’ health perception were being employed, having an education, social support from family and friends, freedom and security, and involvement in society. The results indicate that the respondents perceive their health and life situation as good, despite being marginalized and discriminated.
Article 3 aims to explore how participatory action research and WIL might function as empowering tools in the Roma inclusion process and to propose a working model to use in empowerment of vulnerable groups. The data were collected and produced continuously during the project and consisted of interviews, self-evaluation reports and written essays by the seven Roma participants, participatory observations, research groups’ workshop notes, 21 monthly project reports, the project plan, syllabus of the WIL training programme and notes from a joint planning workshop. The data were considered as a whole and analysed in a triangulating fashion using hermeneutical understanding and inspiration from heuristic research. Through improved abilities to mobilise the local Roma community for social change, the participants' critical health literacy improved, allowing them to experience a greater control over their own lives and integration processes. The results indicate an increased empowerment of the local coordinators indicating that WIL may be a worthwhile approach in strengthening the individual empowerment of Roma people. Based on the findings, health literacy was suggested as a catalyst in the empowerment process, serving as a tool for analyzing and describing the process of empowerment.
Article 4 aims to analyse the health promotion programme from the Roma participants’ perspective. The focus was on their perceived individual empowerment and their perceptions on their contribution to the common good and community empowerment. The data, consisting of interviews and self-evaluation reports of the Roma participants, participatory observations, newspaper articles with interviews of the participants and 21 monthly reports, were analysed through an approach that comes closest to hermeneutical phenomenology. The findings indicate that the WIL approach, the participating nature of the programme, and the trust and support from both the Roma and the non-Roma facilitators, were essential for the development of empowerment. Three main themes emerged portraying the participants’ psychological empowerment: Roma identity, sense of power and sense of belonging. Despite of limited time and resources for local community directed activities, improvements were achieved. The study assumed, the more community directed activities, the more persistent effects were identified both at the citizen- and community levels.
Article 5 aims to visualize and analyze the assumed connection between health literacy and empowerment. The paper is based on a literature search conducted in December 2013. Of the 132 initial hits, no articles addressing the issue were found; yet five articles were identified taking up on both health literacy and empowerment, hence reviewed in more detail. All the five articles acknowledged a nexus between health literacy and empowerment, though the nexus itself was never discussed in specific. The authors suggest that for health literacy to be critical to empowerment, it requires encompassing the social determinants of health emphasizing the individuals, groups and/or communities subjective perception on health and health needs. Such a perspective will build on the genuine needs of the people involved and their empowerment. The article proposes functional- and interactive health literacy as another way to label capacity building for health and empowerment, and critical health literacy as a way to describe empowerment. Hence, health literacy might be regarded as a tool for empowerment. However, health literacy is considered not to automatically lead to empowerment. Health literacy as such might be increased by health education. Crucial for empowerment is to achieve the critical level of health literacy including questioning and reflecting, a sense of power, self-esteem and self-efficacy and an understanding of how to make use of all ones available resources to engage in social and political action.
In conclusion, the findings indicate that the suggested and elaborated WIL may enhance health literacy and empowerment. The assumption is that WIL may be a worthwhile approach for increasing the individual empowerment of Roma people as well as other vulnerable and/or marginalised groups in society, allowing such groups greater control over their life situation and own integration processes. Thus, in the presented model of WIL, PAR and health literacy were catalysts for the empowerment. Further research and interventions are needed, however, in order to elaborate upon and verify WIL’s potential and sustainability in empowering minority and vulnerable groups.
Main supervisor: Leena Eklund Karlsson, assoc. prof., Unit for Health Promotion Research, SDU.
PhD defence on 18 February 2015, University of Southern Denmark, Esbjerg