IASSIDD 2021 Amsterdam - Wieneke Penninga

Wieneke Penninga presents the preliminary results of the first study of her PhD project at the IASSIDD congress 2021: Meaningful moments of interaction between persons with PI(M)D and their direct support workers.

After working as a behavioral scientist for years, Wieneke Penninga started her PhD project in collaboration with the Academic Collaborative Center for Living with an Intellectual disability (Tilburg University) in 2019.

Contact Wieneke Penninga at w.penninga@amerpoort.nl.


Purpose

​In this PhD project, our aim is to gain insight in meaningful moments of interaction between persons with profound intellectual disabilities (PID) or profound intellectual and multiple disabilities (PIMD) and their direct support workers. These insights might help direct support workers to recognize and initiate these moments of interaction.
 

Research method

The PhD project will be executed between April 2019 and April 2024, in collaboration with the Academic Collaborative Center for Living with an intellectual disability (Tranzo, School of Social and Behavioral Sciences, Tilburg University).   Wieneke will be supervised by prof. Petri Embregts, prof. Hedwig van Bakel and dr. Lex Hendriks PhD. The PhD project will contain of five studies, each study focusing on one specific theme. These specific themes are explained below.


Target group

This PhD project focuses on children and youngsters (age 5-18 years) with PID or PIMD, their parents and direct support workers. The participating children and youngsters receive professional support of the healthcare-organizations affiliated with the Academic Collaborative Center for Living with an intellectual disability.


Research topic

Due to the complexity of their disabilities, persons with PID or PIMD depend on direct support workers for many aspects of their life. Because of this dependency, high quality relationships with these direct support workers are crucial and contribute to their quality of life.

Therefore, in many studies the quality of the relationship between direct support workers and persons with PID or PIMD has been explored. As interactions are the building blocks of a relationship, the quality of a relationship can be investigated by exploring the interactions. In this PhD project, we explore the quality of these interactions between direct support workers and persons with PID or PIMD by focusing on the perceptions of the persons involved in the interaction. Our aim is to include the perspectives the direct support workers, parents and persons with PID or PIMD themselves.

Within this project, we will explore what makes a moment of interaction meaningful to each of the stakeholders and what characterizes such a meaningful moment of interaction for them. Our aim is to make the rather abstract concept of ‘meaningful moment of interaction’ concrete, in order to make it easier for direct support workers to recognize and initiate these meaningful moments of interaction.
 

Study 1: What makes a moment of interaction with a person with PID or PIMD meaningful to direct support workers?

Research period: 2020-2021

In the first study, we focused on what makes a moment of interaction with a person with PID or PIMD meaningful to direct support workers. This was explored in a qualitative study, by asking five direct support workers who work with persons with PID or PIMD what makes a moment of interaction with a person with PID or PIMD meaningful to them. They shared that, for example, because of the connection they experience with a person with PID or PIMD or the confirmation of being able to contribute to the wellbeing of the person with PID or PIMD, they value these moments and experience them as meaningful.

 

Study 2: What specific interactive behavior characterizes a meaningful moment of interaction?

Research period: 2021-2022

In the second study, we will explore what behavior characterizes a meaningful moment of interaction. We film direct support workers interacting with a person with PID or PIMD. These videos will be analyzed two times. First, together with the direct support worker that was filmed, in order to determine which moments of interaction are meaningful to him. Second, by the researcher using a coding scheme, exploring what behavior characterizes meaningful moments of interaction. Our aim is to make the insights from study 1 more concrete, in terms of behavior.

 

Study 3: How do persons with PID or PIMD perceive a moment of interaction that is labeled as meaningful by a direct support worker?

Research period: 2021-2022

In this study, we will explore how persons with PID or PIMD themselves perceive a moment of interaction that is labeled as meaningful by a direct support worker. As we cannot ask them verbally, we will use physiological parameters.

 

Study 4: What is the relation between the personal and work-related values and motives of a direct support worker and the way he or she perceives a moment of interaction with a person with PID or PIMD?

Research period: 2022-2023

The way one perceives a situation is affected by his or her values and motives. In this study, we will explore the relation between the personal and work-related values and motives of a direct support worker and the way he or she perceives a moment of interaction with a person with PID or PIMD. For example: how does a direct support worker perceive his or her role and does this effect his or her perception of a moment of interaction with a person with PID or PIMD.

 

Study 5: What factors might help a direct support worker to initiate a meaningful moment of interaction with a person with PID or PIMD?

Research period: 2023

The last study will be an intervention study. Based on the results of the four previous studies we will explore what might help direct support workers to initiate a meaningful moment of interaction.