Who am I now?

A study on identity changes of people with aphasia

A sudden event like a stroke shifts a person’s life story and causes identity changes. Language disorders resulting from aphasia occur in 30% of all individuals with a stroke and are one of the most common symptoms. Communication is crucial in identity formation. Thus, for people with aphasia, it is an even greater challenge to reshape their identity.
To date limited research has been pursued on identity changes of people with aphasia since their communication problems form an obstacle in research. Increased understanding of identity changes in people with aphasia is relevant since research reveals that the need for appropriate mental health services is substantial in people with aphasia.

In this study we will explore how people with aphasia experience identity changes, how they reshape identity in the first two years after their stroke and how health care professionals can better support identity formation of people with aphasia.

Research question

How do people with aphasia experience identity changes and reshape identity in the first two years after their stroke and how can healthcare professionals better support people with aphasia in reshaping their identity?

Research aim

Acquiring greater knowledge on identity changes of people with aphasia in the first two years after stroke onset and providing recommendations for healthcare professionals to enhance support of identity reshaping in people with aphasia.

Results

The first phase of the research focused on increasing knowledge and consistency of the concept of identity in order to compare studies and/or build on existing knowledge. For this reason, a Scoping review was conducted to provide an overview of existing knowledge on the concept of identity and identity changes and formation of people with aphasia. 

In the second phase of the study, a qualitative, longitudinal study will be conducted to explore experiences of people with aphasia. Semi-structured interviews will be conducted, using a narrative approach combined with visual ethnography to explore identity changes after the onset of aphasia.

Impact and valorisation

Therapy should facilitate identity shaping of people with aphasia. However, in clinical practice people with aphasia do not receive the guidance they need due to a knowledge gap. This study addresses this gap by increasing knowledge and providing recommendations for clinical practice. Immediately after this PhD research, a book will be written and a training will be developed in order to share these recommendations with healthcare professionals.

Additionally, a person-centered, holistic approach is appropriate to the new concept of positive health, of which meaning-making is one of the pillars. It is important that healthcare professionals look beyond the disorder and support identity formation of people with aphasia.

This importance is illustrated by the following quotation from Reno Huibers, expert by experience and illustrator of the book “Building identity. Treatment of aphasia – with 25 methods.” Bouwen aan identiteit | Breindok Bookshop.

“Since I can mean something for others again, I feel part of this society, not excessively, but certainly not absent. By building a new identity, I have learned to cope with the enormous changes in my life.” (personal communication, 2020).

Reno Huibers has aphasia. During his treatment programme attention was paid to supporting identity formation. This has made society more accessible to him.

External partners involved: Prof Carlo Leget, Chair Care Ethics, University of Humanistic Studies, Utrecht, The Netherlands; Karin Neijenhuis PhD and Mieke Cardol PhD, Research Center Innovations in Care, Rotterdam University of Applied Sciences, Rotterdam, The Netherlands; The Dutch Research Council (NWO), Doctoral Grant for Teachers