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

Abstract

BackgroundTurkey 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.MethodsOne 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.ResultsThe 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.ConclusionsFamilies 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.

Twice A Minority: Education and Life Experiences of War Victim Refugee Youth with Developmental Disabilities and those of Their Parents in Türkiye

“…Furthermore, they sated that they usually spent the day helping their mothers, they could do chores, but they were not recognized by anyone. Similarly, in studies where the needs of refugees with special needs were emphasized, the need for special education, lack of access to childcare and employment resources were reported (Acartürk et al, 2021;Dew et al, 2020;Öner et al, 2020). Thus, although the present study findings were consistent with the literature, they highlighted the requirements in special education, care, and employment.…”

“…Certain mothers stated that they had free access to healthcare, others stated that they had to pay for healthcare. Previous studies reported that the most requirement of the refugees were childcare, healthcare, employment, and special education (Acartürk et al, 2021;Karadağ & Çalışgan, 2021;Öner et al, 2020). Also, a study reported that refugee parents were satisfied with the available education in general, but they demanded Turkish language education for their children (Bal et al, 2021).…”

“…Studies demonstrated that the development of an education policy for refugees is political and a complex and difficult process, and Turkish curricula are based on political ideology rather than the needs of children (McCarthy, 2018;Öner et al, 2020). On the other hand, schools provide facilities for transition such as novel encounters, learning opportunities, social participation, and literacy.…”

“…Family income, employment and special education requirements are among the unmet needs (Öner et al, 2020). Thus, mental problems are observed in a significant section of the Syrian refugees in Türkiye, who need psychiatric, psychological treatment and special education (Acartürk et al, 2021;Aydın & Kaya, 2017;Bal et al, 2021;Dew et al, 2020;Karadağ & Çalışgan, 2021;Öner et al, 2020). It was emphasized that basic needs should be determined and met without discriminating the refugees or individuals with disabilities, and the current status of these groups should be analyzed based on observations, interviews and examinations (Pearce, 2015;Skinner, 2014).…”

A qualitative investigation of support workers’ experiences of the impact of the COVID-19 pandemic on Dutch migrant families who have children with intellectual disabilities

“…Worldwide, the group of migrant children with ID is estimated at 5 million (Bešic & Hochgatterer, 2020). Due to linguistic and cultural differences, lack of knowledge about the healthcare system, and their socio-economic circumstances (Piérart et al, 2020), migrant parents of children with ID have been found to have higher needs for information and financial support (Oner et al, 2020). One of the first studies exploring experiences of migrant parents of children with ID showed that migrant parents described accessing healthcare as challenging, since they felt that their concerns about their child with ID had not been taken seriously and that they did not receive the help they needed (Arfa et al, 2020).…”