Dealing with disability: challenges in Dutch health care of parents with a non-Western migration background and a child with a developmental disability

Abstract

Purpose Parents of children with developmental disabilities who have a non-western migration background often experience unique challenges in foreign health care systems. This study aimed to describe these experiences to better understand these challenges and thereby improve health care provision. Method Twelve parents were interviewed using in-depth, semi-structured interviews. Our data was analysed, and themes were identified using open, selective, and axial coding. Results Multiple parents in our study had a different perception of what constitutes a “handicap”, may regard it as something that is very severe and highly stigmatized and will be less aware of the complex system of care professionals that aim to support them in the care for their child. Additionally, communication with care professionals may be complicated because of language differences and expectations about the division of roles and responsibilities between parents and professionals. This may result in lower involvement in health care. Conclusion As a result of cultural differences in the meaning, information and interaction about disabilities, non-western migrant parents will have a harder time coping with the diagnosis of their child’s disability and will experience more challenges with their involvement in health care. 1 Implications for Rehabilitation To be aware that non-western parents who are told their child has a disability are likely to experience more shame, fear of stigma and may have other definitions of disability than western parents. To pay specific attention to explain as much as possible about the causes, meaning and medical as well as societal future expectations for children with a disability to parents with another cultural background. To explore which knowledge parents have about their child's disability and the Dutch health care system, so that information and support can be personalized. To make sure there are translators present who can not only translate in the correct language but who can also explain commonly used terms for disabilities and other medical concepts, diagnostic procedures, and other specificities of the health care system of the host country to migrant parents. To psycho-educate parents with a migrant background that they are expected to be actively involved in the professional care for their child with a disability without this having negative consequences for the care of their child.