10D-A (Sweden)
Ann-Sofie Sundqvist
The Everyday Life When Having a Parent with Deafblindness
The everyday life of people living with one family member with deafblindness has been sparsely described. The aim was therefore to explore how the everyday life is experienced by children when having a parent with deafblindness. Eighteen children/adolescents that had a parent with deafblindness participated in the study. Their age ranged between 5 and 19 years, 14 of them were girls and four were boys. Individual semi structured interviews were conducted to collect data. Qualitative content analysis was used when analyzing the interviews. The children's narratives were interpreted as they were Living an ordinary life yet not. Living an ordinary life relates to that the children described that their everyday life was like anyone else's while yet not refers to feelings of having a somewhat different everyday life. The parent's deafblindness was a natural and integral part of the children's life and was not reflected upon as something peculiar. Nevertheless, almost every child stated that some aspects of their lives differed from those of their friends. The parent's deafblindness affected the children emotionally and they described feelings of compassion and frustration when thinking about their parent's inability to see and hear. This study offers a unique insight in the everyday life of children living with a parent with deafblindness and can influence actions taken to make them involved in matters that concern them. It is important that professionals take the children’s needs into account when providing support to parents with deafblindness and the families, thereby promoting health and wellbeing.

10D-B (USA)
Beth Kennedy
How Interveners Learn the Knowledge and Skills Required to Support Students Who Are Deafblind in School Settings
An intervener is a person who has received specific training to provide support for a person who is deafblind. This constructivist grounded theory study was guided by one primary and two secondary research questions: How do interveners acquire the knowledge and skills required to provide effective support and access for students who are deafblind in K-12 settings? What factors contribute to, or detract from this learning process? Are there people who contribute to, or detract from this learning process? Mezirow (1990) Theory of Transformative Learning is discussed to support the findings of the study. This study resulted in an emerging theory of the need for prospective interveners to reflect on training content and practice in order to achieve a higher level of understanding for how best to support a person who is deafblind. In the United States, the portfolio process required to obtain the national credential and the national certificate requires prospective interveners to reflect on their practice using the competencies for interveners put forth by the Council for Exceptional Children (CEC). Interveners who have one of the two national-level credentials have achieved a higher level of learning than interveners who have not completed a portfolio based on the full set of competencies and should be recognized accordingly. People who train interveners must be aware of the positive impact of reflection on the learning process. Training programs that include opportunities for deep reflection on practice offer more robust learning opportunities for interveners, enabling them to support people who are deafblind in ways that promote self-determination and foster independence.

10D-C (Netherlands)
Eline Heppe & Gracia Ng-A-Tham
Co-creation: Working Together with Experts-by-Experience and Care Professionals to Improve Support for Families with a Child with Usher Syndrome
Recent research has shown that families with a family member with Usher Syndrome have a need for support in learning how to cope with this progressive syndrome. In line with the saying "Not about us, but with us", the development of this type of support should be based on the meaningful participation of stakeholders. Therefore, at Royal Kentalis - in co-creation with experts-by-experience and care professionals - a written guideline and training program were developed for care professionals providing support to families with Usher Syndrome. In this presentation we will provide a detailed overview of the role’s stakeholders had in the study. Lessons learned by the stakeholders themselves and other project members will be shared. This will hopefully encourage other colleagues to pursue participation of stakeholders in research.