Psychosocial and cultural needs of children with intellectual disability and their families among the Syrian refugee population in Turkey

Background Turkey is the country hosting the largest number of refugees from Syria, with currently 3 571 175 million persons. The general health needs of the refugees are being addressed; however, people with intellectual disabilities (IDs), particularly children, are relatively missed. The aim of this study was to identify medical, psychological and social needs of children with ID and their families, among the Syrian refugee population in Turkey, and to define psychosocial and cultural needs for planning of future services. Methods One hundred forty-two children (67.6% men; mean age 90.5 months) diagnosed with intellectual disorders were included in the study. Family Needs Survey, with additional open-ended and close-ended questions, was used to evaluate family needs. Items from Developmental Disabilities Profile-2 were used to evaluate and screen cognitive, motor and language development as well as medical concerns and behavioural problems. Data on sociodemographic characteristics were also collected. Results The highest needs were identified in information and financial needs domains. Other indicated needs were on child care and community services domains. The least indicated items were on family and social support and explaining to others domains. An average of 63.5% of the respondents definitely agreed with the Family Needs Survey items. The overall level of identification of need items was higher than that in some previous studies, indicating the level of unmet needs of the studied population. Family income, parents' employment and parents' education were not significantly associated with unmet family needs. Special education services were unreachable for most of the families in the study. Conclusions Families reported the highest needs in information and financial needs domains. The overall level of identification of needs was higher than that in some previous studies, indicating the level of unmet needs of the studied population. The majority of the parents reported that they had sufficient family and social support, which might be a protective factor for parental mental health. Parents' Turkish fluency was very significantly associated with every domain of unmet needs. Language barriers and translation problems had significant negative effects on families, as confirmed by the answers to open-ended questions. Another important factor identified was access to service professionals. Special education services, sorely needed for most of the families, could not always be reached. Although the progress of children who had received special education was not very encouraging, it was better than those who did not receive it. The first implication of the study is that increasing Turkish proficiency or providing high-quality and consistent translation services is vital for this category of children with ID. The second implication is that information and financial needs must be met with priority. Information must be tailored for each child's needs and developmental level. Special education and physical therapy must be more accessible and at higher quality.