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 permitted 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 3-year health promotion project 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 was to analyse and elaborate a WIL model to be applied inempowerment and adult education for the Roma minority- and other vulnerable groups in similar situation. The thesis is based on five papers: Paper 1 aimed 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 theyconsider themselves able to cope with their own life situation within these areas. The data, comprising six interviews, was analysed through qualitative content analysis. The most common understanding of health and well-being was to feel good, secure, happy and having awide social network of family and friends. Health and well-being were considered in a collective perspective, thus controversy earlier studies, the respondents perceived their 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.
The Roma adolescents preferred the tight relationship within the Roma community and associated mostly with Roma, a phenomenon previously referred to as homophily. The processof homophily seemed to be a salutogenic factor and a general resistant resource of the Roma adolescents and hence health-enhancing. Homophily was suggested as a determinant factor of health.Paper 2 aimed to explore how Roma people in West Sweden understand health, well-being,and quality of life, and how they cope with their life-situation. The data, consisting of 27 interviews (n = 33), were analysed qualitatively using a phenomenological hermeneutic approach. The findings indicated that the respondents perceived health as a resource and an ability to self-manage. 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 findings demonstrated that the respondents perceived their health and life situation as good, despite being marginalized and discriminated. A possible explanation to this is what the respondents described as survival strategies. As a result of decenniums of oppression, the Roma have developed survival strategies helping them to cope with the situation and to survive. Paper 3 aimed to analyse whether there is connection between health literacy and empowerment. The paper is based on a literature search conducted in December 2013. Of the total 303 initial hits, no articles primarily addressing the issue were found; yet five articles were identified taking up on both health literacy and empowerment, hence reviewed in more detail. The five articles acknowledged a nexus between health literacy and empowerment, though the nexus itself was never discussed in specific. The paper suggests that for health literacy to be critical to empowerment, the focus has to be on social determinants of health and the involved individuals', groups and/or communities perceptions on health and health needs defined by themselves. Such a perspective will build on the genuine needs of the people in concern. The paper 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. 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 an ability to question the prevailing power relations and societal conditions and reflecting on these, a strengthened sense of power, self-esteem and self efficacyand an ability to utilize these resources to engage in social and political action for change.Paper 4 aimed to explore how participatory action research (PAR) and work integrated learning (WIL) might function as empowering tools in the Roma inclusion process and to propose a working model to use in empowerment of the Roma minority- and other vulnerable groups in similar situation. 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 ajoint planning workshop. The data were considered as a whole and analysed in a triangulating fashion using hermeneutical understanding inspired by 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.Paper 5 aimed to analyse the health promotion project from the Roma participants' perspective. The focus was on the participants' perceived individual empowerment and 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: strengthened Roma identity, sense of power and sense of enculturated social inclusion. Sense of enculturated social inclusion demonstrated the participants "new" way of understanding social inclusion; turning social inclusion from something they feared to something they embraced. As the participants realized that social inclusion would not require them the let go of their Roma identity and culture, their Roma identity was strengthened, they became more hopeful, felt more in control and felt generally better. Despite of limited time and resources for local community directed activities, the participants perceived that improvements were achieved at the local level. In conclusions, the findings indicate that when based on the specific health needs of the people involved, basic/functional- and interactive health literacy together comprise the same idea as capacity building for health that might lead to empowerment. What found to be essential for the Roma local coordinators development of empowerment was the combination of the WIL approach, the participatory nature of the project, the trust and support from the non-Roma facilitators and Roma colleagues, and the perception of being respected as human beings and as equals. The local coordinators empowerment consisted of strengthened Roma identity, sense of power and sense of enculturated social inclusion. This indicates that the suggested WIL model/approach, comprising a participatory approach with health literacy as a tool may be a worthwhile strategy in empowering Roma people and enhancing their self-led social inclusion process. A possible road for Roma self-led integration, hence, might be through a process of enculturated social inclusion. This may also be the case for other vulnerable groups in similar situations. Further research and interventions are needed however, in order to elaborate and verify WILs' potential and sustainability in empowering other minority- and vulnerable groups
University of Southern Denmark , 2015. , 74 p.