The aim of the study provided by the Master of Arts (Education), Erja Sandberg, was to collect and describe the experiences of Finnish families in which the symptoms of ADHD such as attention deficit, hyperactivity and impulsiveness are strongly present. Over 200 families participated in the study sharing their experiences of the support provided by educational, social and health sectors as well as the co-operation between these different bodies.
Sandberg worries about the unequal opportunities families have in getting support from educational, social and health sectors. People who have symptoms of ADHD may have to wait for a long time before they get support.
– Families don't have equal chances of getting the needed services on the state level even though the services are statutory. It is a coincidence if a family meets a professional who identifies the symptoms of ADHD and the need for multidisciplinary supportive services, Sandberg says.
Since ADHD is a familial disorder, it is important to define the need of support for the whole family. According to Sandberg, this is not happening. Adults who have symptoms of ADHD have waited for the support even over decades. Three out of five families describe that the co-operation between professionals does not meet the statutory level.
The educational capital was seen as a protective factor when the supportive services were provided within the family. Highly educated families were able to seek the needed services better and therefore had a greater chance to better function in Finnish society. These families also criticized the one-sidedness of the supportive services.
– For example a family counselling center that works under the social services often offers guidance in the child's upbringing instead of sending the child to medical research. According to Sandberg, offering the wrong kind of support can be very expensive and useless for the society and it definitely does not help the family.
ADHD symptoms lower performance
As medicine has become more refined, it is nowadays possible to categorize more behavioral and cerebral disorders. These can be seen as invisible disabilities and they are even more common than traditional physical disabilities. Finnish legislation takes notice only of visible, physical malfunctioning that causes disability.
– Neuropsychiatric syndrome, ADHD, causes different functional impairments which are not identified by professionals when planning the support. Due to these functional impairments, young people may have difficulties in graduating if allocated supportive measures are not provided by multidisciplinary groups.
Families in need of support can be socially excluded
The difficult situations of the families were demonstrated in the research material in that every third family participating in this study included a socially excluded person or someone at risk of social exclusion. Socially excluded people report about low self-esteem and the sense of being less valuable and even incompetent to function in the surrounding society. The participants stated that social exclusion is a vicious circle from which escape is difficult when no support is available.
Families wished also for the professionals especially in educational and social services to see them through their strengths instead of their weaknesses. Attention deficit and hyperactivity disorder often includes behavioral problems that draw attention and are often noticed. This negative feedback may cause negative outcomes and even psychological malfunctioning. Stigmatization causes underachievement and lowers self-esteem
Sandberg executed the study with the assistance of netnography and the research data was collected from a social network group – a nationwide ADHD peer support group. Over 200 Finnish families participated in the study for three years. The material is complemented with interviews. Sandberg's study provides information about multidisciplinary supportive measures and the experienced effects within the family as well as for the person with ADHD through his/her life course, even during decades.
ADHD is seen as one of the most common neuropsychiatric disorders; worldwide approximately 5% of people suffer from ADHD. It is very common that similar genetic problems run in the family. Therefore, supportive measures should be addressed to the whole family.
Master of Arts (Education) Erja Sandberg defends her doctoral thesis at the University of Helsinki in the Faculty of Behavioural Sciences on the 28th of May. The thesis belongs to the area of special education and is called ADHD in the family – The support provided by the educational, social and health sectors, and their experienced impact. The thesis defense takes place at noon at the main building of the University of Helsinki in the small festive room (Fabianinkatu 33).
Erja Sandberg works as lecturer of special education in Helsinki for students of education, social and health sectors.