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Abstract:

Positive relationships with others are important in the life of every human being. Especially for people with profound intellectual and multiple disabilities (PIMD), high quality interactions are indispensable for a good quality of life. Because of their complex support needs, they need others to explore the world, to show their abilities, and to feel comfortable. However, the development of high quality interaction with people with PIMD is subject to considerable challenges and empirical research has demonstrated that the interactions between people with PIMD and their proxies are not always optimal. Besides, there is no comprehensive understanding of the key characteristics of interaction within this group and methods to describe the quality of the interaction from an interpersonal view have been lacking. Therefore, the aim of this doctoral dissertation was threefold. First, we wanted to get a thorough understanding of the key elements determining the quality of the interactions with people with PIMD. Second, we wanted to find justified methods to describe the quality of reciprocal interaction processes between people with PIMD and their direct support staff. Third, we wanted to examine how an inclusive understanding and integrated description of the mutual interaction between people with PIMD and their support staff may offer directions to support their interaction. Five manuscripts, published or submitted in interactional peer-reviewed journals, addressed these research objectives. The first part of this project consisted of a review of the current research literature on the interaction between people with PIMD and their interaction partners (manuscript 1). Next to a methodological characterization of the research on this topic, important interaction elements were overviewed in an explanatory interaction model. Influencing factors on the level of the persons with PIMD, the interaction partners, and the context were revealed. Constituting components of the interaction were sensitive responsiveness, joint attention, co-regulation, and an emotional component (e.g., mutual feelings of warmth or closeness).In continuation of this manuscript, the second part of this doctoral research explored the usefulness of several observation methods to describe relevant components of the reciprocal staff-client interaction by a combination of quantitative and qualitative data. In a first observation study (manuscript 2) three rating scales from parent-infant research were found to be appropriately describing both interaction partners’ behaviours that build up positive and mutual interaction. A second observation study demonstrated the value of an observation instrument based on the dialogical theory to describe dyadic variables in the interaction between people with PIMD and their direct support staff (manuscript 3). In a third observation study, the frequency and the nature of attention-directing behaviours of the persons with PIMD, attention-directing behaviours of the staff members, and the attention episodes in the dyad were successfully described (manuscript 4). Using the obtained knowledge and justified methods from the first and the second part of this thesis, the third part of this project consisted of a qualitative single-case study combining direct observation with a staff-researcher dialogue (manuscript 5). The results were convincing in how strengths and difficulties in an interaction between a boy with PIMD and his direct support staff member could be identified by means of an integrative theoretical framework and methodology, and by involving the experiential knowledge of the staff member as a complementary source of information in the observation analysis. The empirical findings as well as the methodological and theoretical reflections derived from this doctoral study provide essential knowledge to guide future research on interactions between people with PIMD and their direct support staff. With regard to practice, the obtained understandings and the observation tools can be considered a vehicle for practitioners to gain insight into their interaction patterns, to be confirmed in the available qualities in their interactions, and to discover new perspectives.