Evaluating the quality of interactions between persons with profound intellectual and multiple disabilities and their direct support staff

Relationships with significant others are important in the life of every human being. Especially for persons with profound intellectual and multiple disabilities (PIMD), qualitative interactions are indispensable for a good quality of life. Because of their complex support needs and idiosyncratic communication, they need others to explore the world, to show their own abilities, and to feel comfortable. The current literature, however, indicates that the interactions between people with PIMD and their partners are not always optimal. Besides, to date there is no clear insight into the characteristics of these interactions and how to evaluate their quality. Therefore, the aim of this doctoral research project is, on the one hand, to provide an overview of the key components in the interaction with persons with PIMD and, on the other hand, to find observational methods to examine and measure these components. Our final goal is to develop an observation protocol that can be used to evaluate the quality of interactions between persons with PIMD and direct support staff. With this project we intend to deliver essential knowledge to guide further research and the development of intervention programs. The first part of this project consists of a review of the current research literature, resulting in a model of the interaction between persons with PIMD and their proxies. Influencing factors on the level of the person with PIMD, the interaction partner, and the context are revealed. The constituting components of the interaction are sensitive responsiveness, co-regulation, joint attention, and an emotional component. The second part of this project intends to examine several instruments to evaluate the four constituting interaction components of our model. For that, we start with an investigation of existing instruments from parent-infant research. The Emotional Availability Scales (Biringen, Robinson, & Emde, 1998), the Maternal/Pivotal Behavior Rating Scales (Mahoney, 1992; 1998), and the Rating Scales for Structured Tasks (Egeland, Erickson, Moon, Hiester, & Korfmacher, 1990) appear to be useful to evaluate sensitive responsiveness and emotions in the interaction in a reliable way. In addition, we developed the Scale for Dialogical Meaning Making (Hostyn, Janssen, Daelman, & Maes, pilot) to unfold the quality of co-regulation and joint attention in the interaction. The first experiences are promising but a further application will lead to final conclusions about the usefulness and reliability of the instrument. As a last step, we plan to develop a supplementary method for the direct behavioural observation of joint attention. The final part of this project will consist of the development of an observation protocol, combining a description of the interaction factors of our model and the corresponding instruments to evaluate them. We will test out this protocol in a new sample of staff-client dyads. The interaction between persons with PIMD and their direct support staff will be evaluated by a combination of quantitative measures and qualitative evaluations.status: publishe