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Quality of life of relatives of people with a disability

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Door/By: Max Alvares Vega

Introduction

The purpose of this research project is to gain insight into how the relatives of people with a disability rate their quality of life, what their experiences are and which factors are associated with their quality of life.

Three questions

The three questions addressed in this research project are:
1. How do relatives of people with a disability rate and perceive their quality of life?
2. Which characteristics of these relatives influence how they perceive their quality of life?
3. Which characteristics of the person with a disability influence how this person’s relatives perceive their quality of life?

Answers to the above questions will be sought via a digital questionnaire, research and a number of focus groups, including a group comprising the relatives of people aged 30 or above with PIMD.


Benefits to practice

To gain insight into the quality of life of relatives of people with a disability, and in particular people with PIMD.

About the researcher

Read more about Jorien Luijkx

Jorien Luijkx

Assistant professor
University of Groningen

What is your role within the Academic Collaborative Centre related to people with PIMD?
I am an assistant professor at the Department of Special Needs Education of the University of Groningen. My focus as a researcher at the Academic Collaborative Centre related to people with PIMD is the quality of life of the parents and siblings of people with PIMD.


What do you hope to achieve?

My aim is to raise awareness of – and recognition for – the vital and intensive role that parents and siblings play in the life of a person with severe multiple disabilities. The purpose of my research is to gain an understanding of the quality of life of these relatives and what it means to be the parent or sibling of a person with PIMD. The clearer our understanding of, say, which factors have a positive or negative influence on the wellbeing of parents, the better the support provided by professionals and carers can be tailored to their needs and wishes.