CHAPTER 10 256 were viewed as sub-themes, being: (E1) Because I can decide by myself, (E2) It is more fun to do things with other people, (E3) I just like it, (E4) Because I can do it on my own, (E5) How I feel about being helped, (E6) The things that happen when I am doing the activity make it worthwhile or unpleasant, (P1) With other people, (P2) Adaptation of the physical context, (P3) Adaptation of the activity, (P4) Regular performance, (P5) Support in the social context, (P6) Disabilities obstruct performance which can give rise to personal challenges and (P7) Performance versus avoidance. This study gave voice to children with a mitochondrial disorder which showed their broad perspective on performing activities. The wants and needs, and experiences showed relations to Self-Determination Theory (SDT) that people perform activities to fulfil three basis psychological needs: autonomy, competence and relatedness40, 41. In addition, the interaction between person, occupations and environment as mentioned in the Person-Environment-Occupation-Performance (PEOP)-model42 was present in what children expressed on performing activities. This study contributed to understanding of choices of children with disabilities and their motivation in participating in everyday activities. Furthermore, the study provides a foundation for selecting and developing assessments to measure activity performance that can contribute to person-centered and value-based care. Chapter 4 – Ways to interview children to uncover their perspective Chapter 4 reports on the interview methods used in the qualitative study (chapter 3) in order to get insight in the successfulness of used techniques and skills. All nine videos were subject of study. First, the successfulness in uncovering the child’s perspective was analyzed. Next, the communicative abilities of the children and type of questions of the interviewer were observed. Thirdly, a qualitative directed content analysis of the semi-structured interviews was conducted. Results illustrated the different levels of communication of the children and how the interviewer was successful in adapting her communication to the children and uncovering the perspective of the child in six cases. In three cases it was unsure if the interviewer was successful in uncovering the child’s perspective due to the necessity of parent involvement. The successful interviews showed an occurring verbal communication pattern with adequate responses of the child on either open questions, choosing-betweentwo-options questions, or closed questions. The interviewer used different types of questions between and within the child. The interviewer repeated the successful communication pattern to disclose as much as possible with respect to the aim of the interview. The different interview techniques and skills used to set a collaborative and interested atmosphere are highlighted, as well as both supportive and unsupportive parental actions.
RkJQdWJsaXNoZXIy MjY0ODMw