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

Figures & data

Table 1. Case description of respondents: pseudonym, year of arrival in The Netherlands, country of origin, family situation, age, cause of disability, type of care, and language of the interview.

Parent & child	Case description
Loulou & Marwan	Loulou and her family arrived in the Netherlands from the Middle East region in 2014. Loulou has five children, two of whom have an (intellectual) disability. The interview is focused on the care for her son Marwan (aged 3–10 yrs old), who has severe multiple disabilities and epilepsy of which the is unknown to her. Marwan visits a school for special education. Loulou was interviewed in Arabic.
Lina & Leyla	Lina and her daughter Leyla arrived in the Netherlands from the Middle East region in 2015. Lina’s daughter Leyla (aged 3–10 yrs old), has a delay in language development, of which the cause is unknown to Lina. She visits a school for special primary education. Lina was interviewed in Dutch.
Semira & Patrik	Semira and her son Patrik arrived in the Netherlands from Africa in 2001. They have lived in multiple asylum seekers centers. Semira has two children, one son and one daughter. Semira’s son Patrik (aged 3–10 yrs old) has a developmental delay of which the cause is unknown to Semira. Patrik visits a school for special education. Semira was interviewed in English.
Aissa & Daren	Aissa and Daren are originally from Africa. She arrived in the Netherlands in 2009, her son Daren stayed in Africa and reunited with his mother in the Netherlands in 2016. Daren (aged 11–23 yrs old) has a moderate intellectual disability and epilepsy, resulting from oxygen deprivation during birth. Aissa also has a daughter. Daren lives in a residential institution and visits a specialized daycare center. Aissa was interviewed in English.
Ayla and Nawar & Hadiya	Ayla and her husband arrived in the Netherlands from the Middle East region in 1994. When they were in the Netherlands, their daughter Hadiya (aged 11–23yrs old) was born. Hadiya has a severe to profound intellectual disability, due to prenatal complications and/or a genetic syndrome for which she was tested in the period of the interview. Ayla and Nawar (Hadiya’s sister) were interviewed in Dutch.
Yarah & Omar	Yarah arrived in the Netherlands from the Middle East region in 2017. Her son Omar (aged 3–10 yrs old) has a mild intellectual disability, caused by a rare genetic syndrome. They have lived in multiple asylum seekers centers. He visits a school for special education. Yarah was interviewed in English.
Danisha & Bradley	Danisha arrived in the Netherlands from Africa in 2016. In the Netherlands, they had two children. Her son Bradley (aged 3–10 yrs old) has a developmental delay of which the cause is unknown. Bradley Attendsa specialized daycare center. Danisha was interviewed in English.
Eslem & Semi	Eslem arrived in the Netherlands from the Middle East region with her husband in 1996. In the Netherlands they had three children. Their eldest child, Semi (aged 11–23 yrs old) has a mild intellectual disability, caused by a genetic syndrome. Semi attends a specialized daycare facility. Eslem was interviewed in Dutch.
Saleen and Bashar & Renas	Saleen and Bashar arrived in the Netherlands from the Middle East region, it is unknown in which year they arrived in the Netherlands. Their son Renas (aged 3–10 yrs old), was born when the family was already in the Netherlands. He has a mild intellectual disability, of which the cause is unknown to his parents. He visits a specialized daycare facility. Saleen and Bashar were interviewed in Arabic.
Zofia & Nishan	Zofia arrived in the Netherlands from Eastern Europe. It is unknown when they arrived in the Netherlands. Her son Nishan (aged 3–10 yrs old) has a developmental delay and is diagnosed with autism spectrum disorder. He visits a daycare center specialized in children with a developmental delay. Zofia was interviewed in Dutch.
Rafiq and Zahra & Nemr	Rafiq and Zahra arrived in the Netherlands from the Middle East region. It is unknown when they arrived in the Netherlands. Their son Nemr (aged 3–10 yrs old) has a genetic syndrome which causes a developmental delay. They have another, older, son who has the same syndrome. Nemr visits a specialized daycare facility. Rafiq and Zahra were interviewed in Arabic.
Yusuf & Semih	Yusuf and his wife Fatima arrived in the Netherlands from the Middle East region in 2001. When in the Netherlands, they had two children. Their eldest, Semih (aged 11–23 years) has multiple disabilities and epilepsy. He was born with a birth defect, of which the cause is not mentioned in the interview. Semih visits a specialized day care facility. The interview was held in Dutch.

Table 2. Interview’s categories with examples of probe questions.

Category	Example of question
Background information	What is your country of origin?
	For how long have you been living in the Netherlands?
Perceived causes for disability	When did you first notice [your child] developing differently?
	What is the diagnosis, do you agree with the diagnosis?
Experience in care	What was the best care provider you ever had? Why? (Probes: communication style/listening/contact/understanding)
	In what aspects could the care [facility] better match your wishes that are specific for your culture? (probes: diet, religion, language, recreation, holidays)
Care in the country of origin	How does care in the Netherlands differ from care in your country of origin?
	Do you miss aspects of care provided in your country of origin?