Trial lecture title: Rethinking rehabilitation services to immigrant families of children with disabilities by emphasising cultural sensitivity and family choice and control.
Ordinary opponents:
- First opponent: Professor Snaefridur Thora Egilson, University of Iceland
- Second opponent: Associate Professor Marie Peny-Dahlstrand, University of Gothenburg
- Leader of the evaluation committee: Associate Professor Yngve Røe, OsloMet
Leader of the public defense is Professor Ellen Karine Grov, OsloMet.
The main supervisor is Professor Reidun Jahnson, University of Oslo.
The co-supervisors are Professor Per Koren Solvang, OsloMet and Professor Berit Berg, Norwegian University of Science and Technology (NTNU).
Thesis abstract
The present study explores the experiences of immigrant parents from non-Western countries and their children with disabilities interacting with the health and rehabilitation services in Norway. Immigrants and their Norwegian-born children comprise approximately 18 percent of the total population in Norway, and 80 percent of them come from non-Western countries.
Increasing ethnic diversity in the population and differences in the use of healthcare services pose challenges to the authorities’ stated goal of equitable healthcare. It is, therefore, important to conduct research focusing on diverse populations to provide health and rehabilitation services that meet the needs of immigrant families and their children with disabilities.
This study comprises three articles, with the first one focusing on the experiences of immigrant parents navigating health and rehabilitation services, aiming to generate knowledge of how accessible and tailored the services were from their points of view.
The second article explores the experiences of immigrant parents and their children with disabilities participating in a three-week rehabilitation program with a focus on participation in physical activity, aiming to generate knowledge of how beneficial, culturally adapted, and accessible the services were from their perspectives.
The third article aims to generate knowledge on the experiences of immigrant parents and their children with disabilities regarding community-based participation and services available after the rehabilitation to contribute to developing potential pathways in supporting participation in the local community.
Methodology
The study has a hermeneutic design with semi-structured interviews (articles 1, 2 and 3) supplemented by participant observation (article 2).
An inductive and reflexive thematic analytic approach was applied to explore the meaning patterns in the data produced by the interviews and observations.
The findings are discussed in light of the family-centered theory, a conceptual framework for integration in the healthcare system, and intersectionality.
Results
The immigrant parents were mainly satisfied and grateful with regard to the services, particularly the follow-up services provided by the regional rehabilitation centers. They felt gratitude when comparing the healthcare services in Norway with those in their countries of origin. However, parents experienced several challenges while navigating the health and rehabilitation services, including the need for information, support, and timely help.
They felt exhausted due to years of struggling to access the help and services they required and expressed how it had even affected their own health. The feeling of being treated differently from the ethnic Norwegian families was another challenge they experienced while navigating the services.
The parents’ experiences of communication with health and rehabilitation professionals were influenced by both their own language and communication skills and the professionals’ intercultural communication skills and dominant organizational culture.
The parents’ and children’s experiences of the studied rehabilitation program (article 2) showed several perceived beneficial aspects of the services, including learning new skills, raising awareness about the children’s interests and capabilities, socializing and exchanging experiences, and information among the families.
However, a lack of cultural adaptation, including insufficient information, as well as the location of the rehabilitation center, language barriers, and exclusion of siblings affected accessibility of the services to immigrant families.
Back home after the rehabilitation (article 3), the families also faced several challenges for participation in activities, including the costs, lack of information, follow-up services, and local activities. The rehabilitation and local professionals were mostly not aware of or prepared to address the challenges faced by the immigrant families. The parents expressed their needs for support and continuation of services after the rehabilitation for participation and moving towards an active lifestyle.
Conclusion
This study highlights the importance of mobilization at the individual, systemic, and political levels in providing culturally adapted, accessible, and seamless health and rehabilitation services to immigrant families of children with disabilities.
Further research is necessary to guide policy-makers and health professionals on determining effective strategies for facilitating and enhancing information transfer to immigrant families, transitioning of services from rehabilitation centers to the community-based service organizations, and the best ways of providing family-centered services (FCSs).
The application of intersectionality within health research is also important for examining the power dynamics and existing discourses that can lead to health disparities among immigrant families.
