Focus groups were conducted in the four countries of the project between December 2020 -April 2021, with 23 participants (parents of autistic individuals of a wide spectrum of ages and levels of functionality). They were asked about their training needs and the scope, content and methodology of a training program that would address them. The four focus groups were transcribed and analyzed with the method of thematic analysis, leading to 10 themes, eight of which concerned the content and two of which concerned the methodology of a training program that would be designed and addressed to this population. The eight themes that concern the content were: ‘understanding autism’, ‘psychological distress and impact on the family’, ‘social communication, interaction and skills’, ‘understanding and managing specific behaviours’, ‘child and parent interaction’, ‘social inclusion and autonomy’, ‘sexuality’ and ‘rights, legal and institutional issues. The two themes that concerned the structure and the methodology of the training were: ‘structure of training according to age and levels of functionality and methodology of training and practicalities’. The majority of findings confirmed and strengthened the conclusions of the Literature Review, whereas some of them deepened further our understanding of those. On the other hand, some themes described new topics, which had not been identified in previous research, concerning both the content and the structure and methodology of training.
The focus group in Greece was conducted on the 19th December 2020 with five participants: four mothers and one father of autistic individuals, who were asked about their training needs and scope, content and instruments of a training program they would attend. Greek participants underlined that what they would benefit most from in training is understanding what autism is. With regards to challenging behaviours, they laid emphasis on understanding them, instead of addressing them with a view to stopping them. In addition, they would appreciate learning about the scientific progress of autism research and the available treatments and training of professionals. Parent’s interaction with the child and the capacity to spend quality time with their child was also expressed as a training need.
2. Focus Group in Spain
The focus group in Spain on the 18th February 2021 was diverse based on sex, geographic distribution and severity degrees of support needs of the families’ children. The atmosphere of welcoming allowed people to open up and share their experiences and thoughts in a spontaneous way, all of them expressed their joy for having taken part in the research of the IPAT project. The families agreed on different needs: become aware of what are the rights and guarantees at a national level of their children conducting and maintaining social life administration of daily domestic life and most of all the management of unforeseen events would definitely bring benefit to the whole family. All the families had the desire to participate in a training program. For them, this should not be just theoretical. The issue of job placement turns out to be very important. Parents agreed in dealing with the painful and frustrating theme of “after us”.
3. Focus Group in Turkey
The interviews of the 3rd March 2021 were conducted with a total of 6 families as two focus groups including 3 people in each focus group. In order to obtain more in-depth information from the participants, attention was paid to the fact that they consist of individuals who differ in terms of gender and children’s support needs.
Participants drew attention to the importance of issues such as increasing knowledge awareness about autism, providing professional support, focusing on what can be done to socialize children, and providing children with self-care skills.
The subjects stated by the participants are compatible with the reality of the project in terms of increasing the quality of life of individuals with autism and their families. Generally, the participants agreed on the issues mentioned and stated that they are ready to take on the necessary role for the education of their children.
4. Focus Group in Italy
Seven families of people with autism participated on the 20th March 2021. The group was diverse based on sex, geographic distribution and severity degrees of support needs. The families expressed their pleasure in being part of the project and their interest in continuing to advance in the role of families as the main support of their relatives. Two of the aspects that stood out the most were:
- the need to improve coordination and communication between professionals and families
- training regarding legal aspects that contribute to autonomy, independence and the guarantee of a secure future for their sons.
The group showed some discrepancies regarding the role of parents as therapists of their children, many claimed the role of parents, however, aware of the need to have tools, strategies and training to facilitate knowledge and coexistence with their sons.
The research outcomes of the IPAT project consist of bibliographical and qualitative research of the training needs of parents of autistic individuals. They comprise a Literature Review and a Global Report.